What Happened at the National Maternity Review Team Listening Event?

Yesterday was the first listening event of the National Maternity Review, held at London King’s College.

The invitation, from the Chair of the review herself, Baroness Julia Cumberledge promised that the event would “…be pooling ideas to improve maternity services.”

And that “We are most anxious to hear from all those who have an interest in maternity services; the public, users, commissioners, professionals, and organisations who would like to contribute to our initial thinking. We believe there is much that is exceptional, good, kind, and sensitive to the needs of women and their families. But we also know that there are services which could improve and some which are deeply disappointing with issues that need to be addressed. At this early stage in our work, we do not have any answers but wish to hear from you and your colleagues about your experiences, your thoughts, views and opinions and some possible solutions.”

I was invited because of my work with #HugosLegacy and #MatExp. Hugo was of course present via his handprint on my necklace:

And I was keen to share to promote the post What I Want the National Maternity Review Team to Know

How did the event perform against these objectives?

Overall, very well. The room was full of a range of interested parties including consultant obstetricians, midwives, members of the Royal Colleges of Midwives and Obstetricians; various NHS organisations, members of organisations that had been set up in response to personal tragedy (such as the MAMA Academy and the Campaign for Safer Births whom I was pleased to meet but did not have enough time to talk to).

Julia Cumberledge introduced the event by outlining the scope of the review, which is looking at the maternity experience from conception through to six weeks after birth. The timescale for the review raised a chuckle…

Workstreams include choice, continuity, diversity, professionalism, culture, accountability (mutual respect between professionals and teamwork), levers (triggers and incentives) – and barriers.

The comms plan for the review includes visiting centres across the country so as many voices as possible can be heard.

I loved the ethos for the event:

Be compassionate

Be a friend

Have fun

Assume it’s possible 

And so we began with the first round table discussion, looking at issues and solutions.

A few points from the discussion (facilitated by Cathy Warwick) on our table include:

  • Women need individualised care within a system that genuinely supports the range and variety of experiences and needs women will have
  • Polarisation – high risk/low risk and between obstetricians and midwives – is very unhelpful
  • Connected with the above point, for better collaboration and teamwork between midwives and obstetricians – no ‘them’ and ‘us’. There is evidence to prove that training and working together as a team provides positive results.
  • Dignified care and safe care need not be mutually exclusive (contrary to what some of the polarised debate about where is ‘best’ to give birth may suggest)
  • Time for training – health professionals want to do the best they can for their patients, but are constrained by lack of time for training. Training on things like team working (such as cross over training between midwives and obstetricians so each can better understand each others’ perspectives) and effective communication would be invaluable.
  • Targets – such as C-section rates – are a barrier to women receiving care that meets their own individual needs.
  • Policies, procedures and guidelines are important of course, but there needs to be more encouragement for health professionals to use their own judgement to respond to women’s individual needs without fear of punitive action. This connects to issues relating to training and teamwork – enabling staff to do their jobs and giving them confidence in their practise – in short, empowering them to do their best.

Feedback from the other tables was insightful, including this point that being part of #HugosLegacy was music to my ears…

twitter

There needs to be a seamless care pathway to better meet the needs of mums whose babies are in the neonatal unit, as described in my post about what I want the review team to know.

Other points of insight included:

  • Need to make sure good practice can be shared across hospitals
  • Need to find ways to make sure care is women-centred – this goes back to tick boxes and things like C-section targets.
  • Need for better postnatal care.
  • Need for commissioning that is better connected between CCGs, local authorities, and NHS England.
  • Need to look at culture – acceptance that innovative vision is the way forward to make the changes that need to happen.
  • We need to manage risk, risk should not manage us. Antenatal education needs to empower women to make the right choice for them.
  • We need to eradicate concept of ‘high risk/low risk’.
  • Women and their families need to be more involved in the creation of pathways
  • Evaluation methods need to be more useful for service users – and the feedback meaningful.
  • A woman needs to be seen as a whole person, not a womb with legs – her emotional and psychological needs, for example, need to be considered too.

Three crucial concepts are: language, behaviour, and leadership.

(This is not an exhaustive list, and I may have missed things!)

There are a few issues that bear further exploration, for example: the remit of the review includes experiences up to six weeks after birth. This has the potential to miss two crucial issues: postnatal mental health, and the needs of mothers whose babies are in neonatal care, and/or who suffer a loss. The needs of these women extend well beyond the six week timeframe, and have long-lasting, serious consequences if those needs are not met.

I would be interested to see how the review incorporates these issues.

From a personal point of view, the event gave me a wonderful opportunity to catch up with and meet fantastic people whom I have got to know through social media. I won’t try to name everyone because I usually end up missing people out, but here are some photos…

Flo and I managed to stop talking long enough to take a photo

I loved seeing Alison Baum again (she’s CEO of Best Beginnings, creator of the DVDs for which people so generously donated money for Hugo’s first birthday) and meeting Heidi, founder of the MAMA Academy, of which I am proud to be an ambassador.

Meeting and having a chat with Jacque was fab

Gill and I enjoyed a lovely evening chatting. We forgot to get a selfie, but I have a picture of my pink shoe on my pink bag…

Flo took a JFDI #MatExp view to sharing the campaign, with one of the brilliant graphics and giving people an overview of the Whose Shoes game.

I may be biased, but the innovative, grassroots, no-hierarchy approach of #MatExp is key to the success of the review. It is heartening to see there is interest:

The event nearly ended in tears for me, however. Chatting about #MatExp to two ladies at the end of the event led to me sharing my own experience. Asking how long Hugo lived for (35 days), they commented that it was ‘quite a long time’. I disagreed, saying that it was not nearly long enough. Objectively, I know that as Hugo was born at just 24 weeks the fact I got any time with him at all was miraculous, and I am very grateful for every precious moment I had.

But a tip for others when talking to a bereaved mother: DO NOT try to tell the mother that they are in any way ‘lucky’, and especially DO NOT persist in your point of view once the mother has expressed upset.

The women did apologise, saying it’s difficult to know what to say to bereaved parents. Another tip: empathy is key. ASK the parent how they feel, and if you really don’t know what to say, STOP TALKING.

Considering the breadth of experience of women – and men – attending these events will have, taking a moment to consider sensitivity, as well as sensible things to say (and not say!) is crucial.

Fortunately, it did not mar the very constructive and productive day. I hope we can see our thinking translated into real action and change for women and the staff who care for them.

Next steps are…

and if you want to be involved…

 

 

Mums' Days

I Wish

I wish you were in my tummy for the full 40 weeks.

Or if not, that you could have come home with Daddy and me.

I wish we had thousands of photos of you tracking every day of your life, every milestone, every special moment.

I wish I was able to watch you grow.

I wish we were able to watch that feisty personality grow, develop, form you from baby to little boy.

I wish I were able to sing you to sleep.

I wish I were able to give you a bath, watch you play with your toys and you insist on having a bubble bath punk hairdo.

I wish we were able to have cuddles, so many cuddles, breathing in your smell.

I wish my house was full of your things, clothes, nappies, wipes everywhere. Toys strewn across the house.

I wish I had more than my handbag to think about when I leave the house.

I wish I could see which new food you wanted to try next. Which you spat put.  How much you just chucked on the floor.

I wish I could see how you got on with Fat Cat.

I wish I could take you to the park.

I wish I could read books with you.

I wish I could be running around after you, and celebrate you taking your first steps.

I wish I needed eyes in the back of my head as you took every opportunity to show off your walking.

I wish I could try to have to figure out what your babbling meant, marvelling at you trying to form words.

I wish I could splash in puddles with you.

I wish I could comfort you when you needed that.

I wish I could see the look on your face when you saw something that excited you.

I wish I could see what most interests you.

I wish you, me and Daddy could be a normal family.

I wish I could feel your arms around my neck, your head on my chest.

I wish I could stroke your beautiful dark hair.

I wish we didn’t have to visit you in the cemetery.

I wish I didn’t have to think when buying you a present whether it will withstand the elements outside.

I wish you didn’t have to be born so early.

I wish there had been a magic cure to save you.

I wish I could cuddle and tickle you and hear you giggle.

I wish I could see you and Daddy playing together, forging a special bond.

I wish life was not so unfair.

I wish I did not have to talk about you in the past tense.

I wish I did not have to put up protective barriers around myself, because since you died I have been broken.

I wish I did not have this leaden weight in my chest.

I wish I did not have this darkness in my mind.

I wish I did not have to see symbolic signs of you everywhere, because real, tangible signs exist of your real, living presence.

I wish I did not know such pain, such sorrow, such longing.

I wish I knew such burning love, a Mother’s love that I could express to a child in my arms.

I wish I could cover you in kisses.

I wish I did not have to wonder what you would be like in the future.

I wish I did not have to miss you, Hugo.

I wish.

20140320_153034

Life After…Birth Trauma

Many of you will know the background to my and Hugo’s story. Hugo was born by emergency Caesarean section on February 20, 2014. The circumstances of his birth were hugely traumatic because it was literally a life-and-death situation.

The legacy of the trauma of Hugo’s birth has affected me ever since. Flashbacks, a feeling of disconnection, like I am telling a story about something that happened to another woman, not me.

For a long time I thought I was going completely forgotten. Then I was fortunate to find a wonderful community of peer supporters on Twitter, including lovely Laura. These women have had different experiences of pregnancy and birth, but shared very similar difficulties afterwards. It was incredibly reassuring for me to know that I was not alone in my feelings.

In a very strange coincidence, Laura’s son Arthur was born on the same day as Hugo. Fortunately Arthur is now a lively toddler, but his mummy still battles the effects of life after birth trauma, as she describes. I will pass you to Laura to tell her story…

_____________________________________

On 20th February 2014, my son, Arthur George, was born by emergency caesarean section. That much is definitely true.

Almost everything else is up for discussion.

I remember my labour beginning on the 16th. I believe I was told much later that my son was in the occiput posterior position, at an angle so that he was jammed and could not turn.

I laboured in a great deal of pain for days on end and reached 4cm dilation. During that time, I had two shots of pethidine.

Finally, exhausted, I had the epidural, which only worked partially, and the oxytocin drip, which then had to be increased.

My notes, which I have seen only briefly, record my heart rate at 180bpm consistently.

I pushed before I reached full dilation, because I couldn’t not push, then was given the go ahead to push and pushed for another four hours. Then there was a failed forceps delivery, during which I tore badly. Then the spinal block and caesarean, during which the incision tore open and I haemorrhaged, losing about a third of my blood. The transfusion I was promised never materialised. I went home five days later but was readmitted about a week after that with an infection.

To me, it is a familiar story, but it feels like it happened to somebody else.

Life now is certainly different. I am mummy to a lively little boy and I juggle the mundane – the nappies, the Weetabix dried to cement on my kitchen floor – and the profound – that love – much like other mummies up and down the country. It is relentless and I am tired, much like other mummies. 

Unlike other mummies, I carry a deep grief. I grieve for the months that I was on autopilot, consumed by my own trauma, unable to love. I see photographs of my son as a newborn and I do not recognise him. It feels as if I missed that time, as if I were somewhere else, and I can never get it back.

It is mingled with the grief of yearning for another baby and knowing that it would not be the right choice for our family. In my mind, Arthur has a little sister. I see her so clearly. I know her name. I even talk to her sometimes. And sometimes I like to pretend that she will one day be in my belly, then in my arms.

I know pain – physical pain – as a companion in a way that I could not have understood before. Pain was always a temporary inconvenience. Now it is normal, and it is likely to be normal for the rest of my life, so I have learned how to work with it. I can no longer go from lying to sitting in one movement. I roll on to my side to get up in the morning. There are some chairs that I cannot get out of gracefully. One adapts. None of these things are world-changers, and actually I am astonished at my body’s ability to piece itself back together. 

My mental health took a harder hit, I think, though I was nobody’s poster girl for mental health to begin with. This was, in a way, a blessing: when you are used to carrying a heavy load, a few extra pounds are perhaps easier than if you had never lifted anything before.

Still, I know the hypervigilance makes me a nightmare to live with: every moment is a crisis, an emergency, whether it’s something minor or something imaginary or even just a vague, gnawing unease. It is exhausting for me to be terrified so much of the time and it makes me irritable and stressful to be around. 

Then there are the flashbacks. They come without warning and you cannot prepare for them. Imagine having a time machine but the machine is control. It can transport you back whenever, wherever.

I appreciate that this sounds odd; I will give an example. One evening, a few days ago, I was in a rocking chair in my son’s bedroom, with my toddler dozing happily, sprawled across my lap. My body noticed before I did that I was thirsty. (Thirst is a huge trigger for me now, and it’s difficult in this hot weather.) I was tired, and I lay back for a moment. 

Suddenly I am so, so thirsty. The thirst is pain. I am on my back, unable to move. I have forgotten that I am having a baby. I have forgotten even who I am. All I know is the moment I am in, no context, no meaning. And the thirst. I am trying to speak, to ask for water, but there is no saliva in my mouth. Whenever I see a face, I try to plead for water with my eyes, but they don’t hear me. Then I see a face that I recognise – my husband – and he is holding a white plastic hospital cup of water. In that moment, he is Jesus Christ, Buddha and all four of the bloody Beatles rolled into one. He holds the cup to my lips – and it spills, soaking into my hospital gown. It is too awful. He is back, with a brightly-coloured plastic straw in a new cup of water. I manage the smallest sip before the next contraction consumes me and everything rolls away.

And then I am back and it is sixteen months later and the baby is here, grown tall and fair and fast asleep on me. I am in a warm, dimly lit room – his bedroom. I tell myself things – the date, my age – to remind me of the present. The past is gone. I am shaking a little, but it is time to put my little boy down in his cot, to go downstairs and tidy his toys, to eat dinner and live the rest of this day.

That’s all any of us can do, in the end. I call it ‘the assault of memory’, the way I relive parts of the labour, birth and postnatal period over and over. But I know that I am fortunate to be alive. I am so fortunate to have Arthur, who is everything and more. I hope that I can forge meaning from my birth experience and one day help others.

___________________________________________

If you are interested in maternity services, you may be interested in joining the Maternity Experience community.

Got a Life After…story to share? Get in touch – headspace-perspective@outlook.com

 

What I Want The National Maternity Review Team to Know

The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

That Language Matters

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

In Hugo’s memory.

Life After…The Neonatal Intensive Care Unit

Raising awareness of issues affecting premature babies and their families is something I am very passionate about. I am pleased that today’s Life After comes from wonderful Catriona of the brilliant Smallest Things, which is focused on campaigning for babies born too soon. Here, Catriona writes about what happened after her first son was born much earlier than expected, and his stay in the neonatal intensive care unit (NICU).

Thank you, Catriona, for sharing your story and helping shed light on the life of premature babies and their parents.

____________________________________________________________________

I was just six and a half months pregnant (exactly 30 weeks) when my first son was born. I hadn’t got the crib in which he would sleep, no baby grows or snuggly toys and my maternity leave was still weeks away. I wasn’t ready, but he was in a hurry!

My waters had broken at home and I had calmly taken a taxi to the hospital. I was in a state of shock, perhaps also in denial – this couldn’t really be happening, could it?

When the midwife told me my baby would be born very soon I still remember my words – ‘But I don’t have anything to dress him in’. My first instinct was to care and provide for him. I reached out to him when he was born, but he was whisked away to neonatal intensive care where a machine would breathe for him and an incubator would shield him from the outside world into which he was born so early.

He spent eight long weeks in neonatal care; but for those eight weeks, time and the world seemed to stand still.

Our life became the neonatal unit. The monitors, machines, incubators and tubes. The nurses and doctors, expressing and sterilising. Bottles and boobs, numbers and charts. Eight long weeks and the outside world ceased to exist. Our world was in the hospital fighting and growing.

The relief of ‘making it through’, of finally getting there and making it home was damped by the growing realisation that I was a NICU mum.

It seems strange to write about life after neonatal care, when in reality the journey continues.

I struggled to reconcile what should have been one of the happiest moments of my life, the joy of a new baby, with the reality of trauma, resuscitation, life support machines and emptiness. Pangs of jealousy crept in seeing heavily pregnant women and new baby photos were suddenly everywhere I looked. Sometimes I was consumed with grief and anger at my lost months of pregnancy, the lost time to prepare and the lost time with my baby. For a long time I was haunted by a dull ache on my chest where my baby should have laid his head.

As time went by the anger and grief settled, helped in part by learning that I was not alone in these thoughts; indeed they are common to many women following birth trauma or time spent in NICU. The dull ache on my chest no longer plagues me, although sometimes I wish it did. Instead it has been replaced by something much more unpredictable and invasive – anxiety and post-traumatic stress.

For parents of babies born too soon the slightest cough or cold can cause untold worry. For me, coughs and colds are synonyms with repeat hospital admissions and breathing difficulties; all contributing to vivid flash backs of alarming monitors, breathing tubes and the mechanical rise and fall of tiny chests. This is the untold story of neonatal care and this is how life after NICU can seem for many women. This is why I created and set up the Smallest Things Campaign last year. I didn’t want other mothers like me to happen to stumble across a website in order to discover that the feelings they were experiencing were completely normal and shared by many others. Instead mums should be supported throughout their NICU journey and yes, this means following discharge home.

For me life after NICU isn’t really life after NICU; it is a life-long membership to the Preemie Club, a former NICU mum through and through. I am fiercely proud of my boys, both born early, and am in awe of what I have seen them achieve. Yet even when they are well anxiety and PTSD is always lurking in the background. The journey and life after NICU continues…..

Smallestthings

_____________________________________________________________

If you would like to share your Life After…story, please get in touch:

headspace-perspective@outlook.com