Maternity Experience

Language

#FlamingJune – #Matexp igniting the flames to improve maternity experiences

Wow what a month its has been!  The whole of June has been #FlamingJune, a month when everyone was asked to share actions big or small to show ways they are going to improve maternity experiences. Everyone whether a mother, a doula, a midwife, blogger or campaigner was invited to post actions on the Matexp facebook page, the twitter hashtag #Matexp or the Matexp website.

What a response! In fact there have been so many actions it is impossible to list them all. But here is a little round up of the general ideas behind the actions.

LISTEN, this was mentioned by so many and shows how important is it that women are listened to, in pregnancy, during birth and afterwards. Many voiced that this simple action alone would have improved their experience and many voiced that listening to women more was their action.

ADVOCATE, for women, for families, by Blogs, campaigns, education classes and working with local maternity liaison service committees many spoke of ways they will seek to support families. Some will be doing so be simply voicing their own experience.

CHOICE, campaign for, raise awareness of, make sure women are aware of and given choices and that their choices are listened to, respected.  Some actions involved women simply educating themselves on the choices available to them, while others spoke about raising awareness of options and choices and how to get support.

SUPPORT, for breastfeeding, families with babies in NNU or on paediatric wards, perinatal mental health and for families that have lost their precious babies. Also how healthcare professionals can all work together to make support for families better. There were so many amazing ideas and actions on support and again many voiced how important support is.

Some said that their actions were to become midwives and health visitors and to be on the frontline of supporting women and their families, to change cultures and improve maternity services.

During #FlamingJune we have discussed, tongue ties, infant feeding, baby loss, perinatal wellbeing, birth trauma, medication while breastfeeding, NICU, low birth weight, PND and much more. These were based around the Matexp twitter Alphabet.

This month saw us celebrate fathers day and the importance of dads to families. We saw beautiful pictures on the Matexp facebook page of dads doing skin to skin, holding, playing and loving their families. It was so moving, and truly showed how valuable they are and all partners, to the wellbeing of families.

This month was also #celebratebreastfeeding week. Again we saw amazing pictures and comments of the good support that families have had, but also many posts on the lack of support that so often seems the situation many families face. With many areas finding cuts are being made to breastfeeding support it is a timely reminder of how important it is that feeding support is part of a good maternity experience.

#FlamingJune saw the release of the first, of we hope many, videos on Matexp. Florence, Gill and Sarah in a really moving video shared with us all how and why Matexp started, the whoseshoes workshops and the impact it has had on services.

Also the first Matexp workshop to be held outside of London in Guernsey which is so exciting. Hopefully workshops will start to spread all over the UK and who knows eventually, maybe the whole world.

So as we reach the end of #FlamingJune what now?  Well if you haven’t made an action you still can, it doesn’t have to be a big change it can be as simple as thinking about the language we use around a pregnant women or to share our story. If we have made an action, keep going to see it through. Every small change we make as individuals makes a difference. It maybe that your action will be hard to make happen, or will take a long time, but don’t give up because even just changing the maternity experience for one family makes it so worthwhile.

There are more plans ahead for the coming months, so much to look forward to. Thank you for the journey so far, for your actions, thoughts, comments and support. Matexp puts families at the heart, its overall theme is kindness and compassionate care. It is a safe place for everyone to voice their views. So take a look and get involved in making maternity experiences better for everyone.

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Emma Jane Sasaru

@ESasaruNHS

 

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The #MatExp month of ACTION begins today. Why women everywhere need the Maternity Review Team to engage!

June is not going to be dull…! For me personally, this is a big week – I am looking forward to speaking at the NHS Confederation Annual Conference on Wednesday. The session I am involved in, chaired by Dr. Mark Newbold, is about urgent care of older people. The emphasis of my contribution is around prevention, holistic approaches and joined-up systems, ensuring that life is not over-medicalised – the simple things that make life worth living.
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Mum, known on Twitter as @Gills_Mum, is extremely interested in my talk and threatening to write a blog of her own…

Preparing my presentation brings home yet again the parallels and key themes across all areas of my work. Hardly surprisingly really as we are all people; aspirations, hopes and fears and the desire to have control over our own lives do not suddenly change just because we get older.

FlamingJuneToday starts the month with a bang.

Our #MatExp campaign, to improve the maternity experience of women everywhere, goes up a gear.

For anyone who has been twiddling their thumbs and wondering what to do with themselves since the end of the #MatExp alphabet (yes, we know who you are!), you will be delighted to know that June is a month of action!
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https://twitter.com/QuashieMichelle/status/605070391531466752
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#MatExp #FlamingJune – we are just waiting for the weather to catch up … although perhaps it is just as well it is a bit cool outside or the energy burning in this remarkable grassroots campaign might just start some forest fires!

https://twitter.com/helenbevan/status/605290170477367296

Sheena Byrom is an extraordinary woman. As her action for June, she is posting blogs from individuals who have information to offer to the new team set up to conduct a national review of maternity services in England, led by Baroness Julia Cumberlege. We all feel passionately that this new review team needs to engage with the action-focused, inclusive work of what has now become an unstoppable social movement for positive change.

And so it is a huge honour that Sheena invited Florence Wilcock and me, as the initiators of the #MatExp campaign, to write the opening blog and tell everyone what has been happening and why is it so important for these links to be made.

Sheena is publishing our blog today on her site. But for ease you can also read it below. We are all working together in a very strong collaboration and taking the view that the more different channels we can use to spread the word and involve more and more people, the better!

OUR GUEST BLOG FOR SHEENA BYROM IS REPRODUCED BELOW…

We would like to kick off Sheena’s June blogging series with a strong call for the Maternity Review Team to engage with our fabulous #MatExp grassroots community. We need to build on all the amazing work that has been happening over recent months through this passionate, inclusive group.

So what is #MatExp and how did it come about?

A lot has been written about this already – for example, Florence’s ‘in my shoes blog’.

Florence and Gill made this short video when, due to the phenomenal grassroots energy it had inspired, #MatExp was included as a major campaign in NHS Change Day, 2015.

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Users came forward not only to join the various actions but to initiate and lead them themselves. You can check out the actions here but they cover everything from appropriate language, postnatal support, best practice and experiential learning – including many male obstetricians spending time in the lithotomy position!

Florence is a passionate obstetrician and clinical leader, who was asked by the London Strategic Clinical Network to find ways to improve maternity experience in response to a poor CQC report identifying that six of the seven worst trusts in the country for maternity experience were in London. Florence approached Gill, the creator of Whose Shoes?, to co-produce some challenging Whose Shoes? maternity scenarios and run a series of workshops, getting users and professionals and all other interested parties – NCT, MSLCs, everyone! – to work together as equals and come up with imaginative solutions.

IMG_8292With support from NHS England, five very successful and fully subscribed workshops were held across London.

Queen’s Hospital session in action

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The combination of the face-to-face workshops and the social media network have been extraordinary, with lots of overlaps. For example Helen Calvert and Leigh Kendall, two of the mums now helping lead the campaign, came down to London to join the workshops and they also contributed to the #MatExp NHS 6Cs webinar.

Booklet - MatExp WSThe Whose Shoes? workshops, supported by a full leadership and facilitation toolkit kit developed in partnership with the London SCN and NHS, are now planned at other London hospitals and spreading to other parts of the UK, including a session in Guernsey at the end of June.

There is a lot of cross-fertilisation of ideas between localities and between hospitals, with a strong emphasis on building relationships and collaborations. Each workshop culminates in pledges and a local action plan, formulated by the people at the workshop and encapsulated in a powerful graphic record.

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Graphic record from our #MatExp Whose Shoes? workshop, held at Kingston Hospital. New Possibilities are the graphic artists.

Inevitably the themes are similar between the different sessions but with a strong local emphasis and most importantly local ownership, energy and leadership.

On Gill’s original blog there are LOADS of scrolling photos at this point showing #MatExp #Whose Shoes workshops and the wider campaign in action – take a look!

It would be easy for the NHS Change Day campaigns to lose momentum after the big day itself, (11 March). #MatExp has done the opposite, continuing to build and bring in new people and actions. #MatExp #now has 110 million Twitter impressions. We have just finished the ‘#MatExp daily alphabet’, a brilliantly simple idea to get people posting each day key issues related to the relevant letter of the alphabet.

This has directly led into the month of action starting today, 1 June!

Helen Calvert set up and ran a survey of health care professionals. She had 150 responses within about 10 days and analysed and reported the results – an extraordinary contribution.

We have a vibrant Facebook group (please apply to join – initiated by fab Helen Calvert @heartmummy) and the brand new website (LAUNCHED TODAY! – huge thanks in particular to Leigh Kendall @leighakendall) set up by the #MatExp team of mums who are incredibly focused, working long hours – all as volunteers. We are all absolutely determined to keep working together to improve maternity experience for women everywhere.

Gill Phillips and Florence Wilcock

There will be LOADS of ideas to help you…
So please get involved.

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The Importance of Balanced Messages When Talking About Birth

This post was prompted by a Twitter discussion about helpful and unhelpful vocabulary in healthcare communication.

The discussion stemmed from a Guardian article bearing the headline “Should pregnant women be encouraged to shun labour wards?”.

The words used in the headline falls into the ‘unhelpful’ category. The article actually includes the experiences of three people: one an advocate for home birth; a mum who chose to give birth in a hospital; and a dad whose wife chose a home birth for their fourth child – there were complications and he advocates choice. In short, the article really says “different women choose different places to give birth for different reasons”.

Articles such as this are all as a result of new NICE guidelines that suggest 45% of births are more suitable for midwife-led care or home birth. Difficulties with healthcare communication and such headlines can arise when words such as ‘are’ and ‘is’ are used. Yes, the guidelines are based on evidence, but when you say ‘are’ and ‘is’, people tend to interpret that as a blanket fact. ‘Could be’ is better than ‘are’ because each woman is an individual, with her own individual needs.

Some commentators are concerned the guidelines could remove choice, rather than giving more, worrying that ‘encouraging’ women to give birth at home is a euphemism for ‘forcing’ them to do so.

This example demonstrates that whenever a new guideline on any health matter is released, it will be met with a healthy dose of cognitive dissonance – people interpreting the news based on their own experiences, expectations, hopes and fears.

Cognitive dissonance happens even if you have evidence for your new guidance coming out of your ears. As an NHS communications manager, countless hours of my life have been spent translating NHS guidance on a range of matters – cancer screening, vaccinations and healthy lifestyles to name just a few – into something that the public can understand, relate to – and hopefully act on.

When writing a press release on a health matter, or a patient information leaflet great caution has to be taken to not over-generalise, raise unrealistic expectations, or be misinterpreted by the media (although with the best will in the world the latter is not always possible).

I understand that years of scare stories about all forms of birth have led to a crippling fear of birth. Balance is what is needed. When talking about home birth or midwife-led care being a safe or a safer (than hospital) option for a certain group of women, we should be careful to emphasise those options are not safe or safer than a hospital birth for every woman. A lack of that emphasis could have the unintended consequence of making women who have to give birth in hospital, or need to have interventions for whatever reason feel less of a woman, or to have failed, or to feel guilty.

Surely none of us want that.

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I know a couple of women who have given birth by Caesarean section, both emergency and elective. They said they have had comments from women who have delivered their babies naturally such as women who have had C-sections ‘haven’t really given birth’. What a horrible thing to say! I had an emergency C-section myself, and while I have little doubt pushing a baby out of your vagina hurts (a lot, probably), having your stomach muscles cut open is far from an easy option.

Yes, we need to stop fear of birth. Yes, we need to promote birth as a normal life event. But we should be careful to not encourage or perpetuate bitchiness and competition between women as another unintended consequence of these messages.

This is the kind of statement about birth that I would love to read:

“Individual women have individual needs when giving birth. Many women are able to give birth at home, but because of issues with the current system not all who want to choose a home birth get it. Hospital can be a stressful place to give birth, which can lead to some women having interventions that are unnecessary. That’s why we’d like to give more women, in joint discussion with them, the option to give birth at home if they are considered to be low-risk. However, the needs of mums and babies are paramount, and as birth is not always straightforward there may be mums who need to give birth in hospital, with or without intervention.

“Our ultimate aim is for every woman’s experience of birth to be positive. We will do that by empowering women to be able to voice their opinions, have as many options as possible, and strive to remove fear and guilt by saying there is no right way or place to give birth.”

I know my fantasy statement above is what the guidelines are trying to achieve – this statement from NICE sort of says the same thing.

The trouble is, some people will be literal and translate the key point into ‘they’re saying home birth is safer, that means hospital birth must be dangerous’. This isn’t helped by headlines such as this one from The Mirror: “Mums-to-be warned: ‘Have your baby at home, it’s safer’”.

Many people are too busy to delve in to the facts behind the story (or just can’t be bothered to look). That results in a perception that the guidelines are saying something like:

“Home is the safest place to have your baby! Good luck to you if you have to give birth in hospital. They’re scary places, staffed by evil obstetricians whose greatest pleasure comes from inflicting pain by doing things to you that you don’t need.”

Ergo, more fear is created by stigmatising hospital birth. We don’t want such a vicious circle. So, balance. When talking about birth, think about helpful and unhelpful words, how they might be interpreted and their consequences.

We also need a greater emphasis on patient feedback, so services know what to focus on. Happily, more hospitals throughout the NHS are doing this.

As well as listening to negative experiences so services can improved, we need also need to promote the positive experiences – fear not, there are plenty of them, wherever the mum gives birth, and however the baby comes out.

 

Note: I called the statement a ‘fantasy’ for sake of the avoidance of doubt that it’s not an official statement.

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My HELLP Syndrome Experience (Part 1)

One night when I was 23 weeks’ pregnant, I woke up with a pain in my chest.

“Heartburn,” I thought.

It was uncomfortable, I felt constantly full. Normal heartburn medicine did nothing.

I was putting on a lot of weight. Normal for pregnancy, I thought.

I was becoming breathless. Related to the weight gain, I thought.

I was very emotional. Normal pregnancy hormones.

I Googled my symptoms. Preeclampsia was a possibility. “Don’t be ridiculous,” I thought, “I am only 23 weeks’ pregnant.”

This went on for six days. Getting progressively worse.

The heartburn became painful. I was unable to sleep. I got up in the night to drink milk. I don’t like drinking milk. I even resorted to taking paracetamol, having resisted any drugs in my pregnancy until then.

Day seven brought a routine midwife appointment. High blood pressure. Ridiculously high. Surely the machine must be broken, I have low blood pressure. Three pluses of protein in my urine. I had to go straight to hospital for further checks.

I knew the protein was a symptom of preeclampsia, but I was not worried because I was only 24 weeks pregnant. I thought it was a problem only in later pregnancy. I thought I would be bored in hospital. Lots of waiting around. I had forgotten my Kindle.

How wrong I was.

Arriving at Bedford Hospital, more urine given, blood taken.

A consultant comes to see me. I have preeclampsia and something called HELLP syndrome. Everything else is irrelevant because they say I will have to deliver my baby that night. I am seriously ill, and the only cure is to deliver the baby.

It is early, far too early.

I am distraught. So is Martin. We cannot believe it.

An injection is put in to my thigh. It hurts. But it is a steroid, to help my baby’s lungs develop. It is the first of two such injections.

I am taken to a room that doubles as an operating theatre. I have to remove all my clothes and put on a gown. I am advised to remove my rings, because sooner or later my whole body will swell and they would have to be cut off.

A catheter is inserted. I do not understand at that time the concern for my kidneys. I am sure someone must have told me, but I do not remember. It takes me several weeks to figure out the connection.

I must have a cannula so they can give me magnesium sulphate to protect my and my unborn baby’s brain from potential seizures. A doctor tries, then the consultant. Anaesthetists are called. They try, one arm each. So many attempts, but the cannulas do not flush through. I am able to count 20 puncture marks when the bruises appear later that week. Martin leaves the room because he cannot bear to see me in such pain.

Mercifully, they give up and insert a central line. I lie perfectly still, a plastic sheet over my head as they insert a line into my jugular. It is stitched into place. It is difficult to move my head.

They start the magnesium sulphate through the line in my neck. All of a sudden I am on fire. My skin is burning. I throw up.

A radiographer comes to take an x-ray of my chest, to make sure the central line is in the right place, not poking into a lung. A lead apron is placed over my belly to protect the baby. I am asked if I am happy having an x-ray because I am pregnant. “Of course I am not bloody happy about it,” I reply. But what choice do I have? A punctured lung not do me or my baby any good.

Me in Bedford Hospital. You can see the central line in my neck, and how big I was becoming (besides me being 24 weeks' pregnant).

I am told I my baby will have to be born that night. There will be no time to induce me, so a Caesarean section it is. An epidural is out of the question because my platelet levels are too low. A general anaesthetic it will have to be. My baby is too small to be cared for in that hospital so will be immediately transferred elsewhere, with me following when stable enough.

Platelets are what enable the blood to clot. An epidural could cause bleeding in my spine and leave me paralysed. I do not want to be paralysed, but nor do I want my baby to be sent away from me, with the chance that I will never meet him.

Two neonatologists come to see me. This hospital is equipped to care for babies from 34 weeks. My baby is far too early. I can see the fear and uncertainty in their eyes. They say there is a 50/50 chance whether our baby will be born alive. If alive, he is likely to suffer a short, painful life because of brain bleeds and bowel problems. They ask us if we would want them to attempt resuscitation. We do not hesitate to say we want our much-wanted baby to be given every chance. We are terrified.

This is Monday night. Martin sleeps on a reclining chair next to me. Except neither of us sleep. We both sob, mourning the baby we have not yet met.

I am given hourly checks on my reflexes. I am not allowed to eat, with the possibility of a general anaesthetic soon. I am allowed only enough water to swallow more medication. I am attached to a blood pressure machine and a sensor on my finger to monitor my heart rate.

Morning arrives. My baby is still in my belly. Relief! I am feeling much better. I am allowed to eat, but my fluid intake is still strictly monitored. My mum arrives, having set off early that morning and driven all the way from Devon.

The doctors are puzzled. My condition has stabilised, and some things have even improved. I am special. The kind of special that no one wants to be. I am still not going anywhere though. I am forbidden from getting out of bed. They are waiting for me to be stable enough to be transported to a bigger, specialist hospital. Wherever has a spare bed.

A student midwife is posted next to my bed all day. I am glad, I have someone to chat to. I do not realise at that time that she is there not for my entertainment, but in case I suddenly have a seizure, or otherwise suddenly deteriorate.

The midwives consult the procedure for the care of women with preeclampsia, it is something they see so rarely. They are kind and different ones pop in to see me to see how I am getting on.

A friend visits. While she was there, she tells me months later, the consultant arrives. He tells me I am seriously ill and that they are very worried about me. “Oh ok!” I apparently cheerfully reply. My friend is terrified. I remember her visiting, but I do not remember this conversation.

I am completely, blissfully, away with the fairies.

That night Martin returns home to sleep. There are more hourly checks. Some people turn on the wrong light switch, turning on the dazzling theatre lights. The infusion machine seems to be programmed to occlude and alarm every time I drop off to sleep. I am exhausted.

Wednesday morning arrives. I am allowed to get out of bed for the first time since Monday evening. I waddle to the shower to sort of get clean – I am told to try to not get my central line wet.

A bed has been found for me at St George’s Hospital, in south London. Liverpool was next on the list. I am happy with south London. In fact, I don’t really care. An ambulance has been called to take me there. Two midwives will accompany me. What an overreaction, I think, I feel much better than I did on Monday. Martin is unable to come in the ambulance, not enough room, so he follows by train.

We speed down the M1, blue lights and sirens blaring. Zoom through central London. The ambulance is uncomfortable, lying on a stretcher.

I arrive at St George’s. Taken to another private room. The midwives and paramedics wish me well and depart. My history is taken by more doctors. They say I will be moving to another room, one with more monitoring capacity, but first they need to move the woman currently in there out: I need it more. The severity of my illness still doesn’t dawn on me.

I am taken in a wheelchair for Doppler scan. It is a busy waiting room. People stare at me in my bottom-baring gown, central line, catheter, and generally looking a mess.

Martin and I are excited at seeing our baby on the screen. We are told our baby is growth-restricted, but I am mesmerised. The sonographer apologises, she would like to explain more but it is a rush, it is the end of the day, and she needs to get the results to the consultants. We are given an appointment for another scan in a week’s time. Hope.

I wait in the corridor for a porter to take me back to the ward. My heartburn is getting worse. I feel so sick. The pain is awful. I just want someone to take the pain away. Back on the ward, I do not know what to do myself. The pain! I stand by the bed. I start to shake uncontrollably. I am given medication, the pain goes away. I feel so much better.

That night I sleep so well. Martin is on a mattress on the floor next to me. I have my hourly checks. The baby’s heartbeat is strong. Everything feels ok. I will wait in this bed for a few weeks, let my baby get bigger and stronger before he has to be born. I will be bored out of my mind, but that will be ok.

I do not have time to be bored.

Thursday morning, a contingent of consultants arrive. They ask me how I feel. I say I feel really good: I have finally had some decent sleep, and the pain has gone. They say I am not ok – my baby will have to be born that morning. For real, this time.

I sob and sob. It is too early, far too early. We were going to have more time. I am given an examination to see if I can deliver naturally, but my cervix is locked shut. A Caesarean it is. Martin holds one hand, a kind doctor another. Both try to reassure me. I ask whether my baby will be born alive. They cannot say. They tell me how ill I am, apparently. I do not remember.

Anaesthetists arrive to explain what will happen. I listen but I do not hear, I am too distressed, and anyway I do not care. A consultant explains the risks of the section: bowel and bladder rupture, the chance of no more babies. I do not care, do whatever you like to me, make sure my baby is ok.

I am wheeled down to theatre. I feel like the worst mother ever: knowing my baby is likely to die so my life can be saved. A strange calm comes over me. I accept that I am unlikely to meet my baby. We will get a dog, and go on a holiday when I am better. Martin and I kiss and cuddle. He is not allowed in theatre with me. I tell him our baby is going to be called Hugo. I liked that name, but we had not been able to agree on a name for our unborn son.

One anaesthetist gives me a fluid to drink to stop my stomach acid rising. I am told to down it in one, like a shot. They are both so kind. But this isn’t going to be a good time. They need to put more needles and lines in me. I am given a sedative so they can do that. That is the last thing I remember.

Hugo is born at 11.20am, weighing just 420 grams. He is ventilated and whisked off to the neonatal unit. Martin is there when I wake up. He tells me Hugo is alive. I give the biggest smile. I do not remember this conversation, nor do I remember him holding my hand while I am wheeled all the way to intensive care, the other end of the hospital.

Hugo on the day he was born

I remember the nurse saying my name, trying to get me to wake up. I have more wires. One in my wrist marked ‘arterial’ to measure my blood pressure. A drain coming out of my tummy. Oxygen prongs up my nose. More magnesium sulphate being pumped in to me.

I just want to know about my baby. I want to see him, to be with him. I am told that day is impossible. I need to rest. There is still danger even after the baby is born. I lost two pints of blood during the section. I am swollen everywhere. I cannot grip anything with my hands. My mum feeds me fruit yogurt, I cannot use a spoon.

A consultant visits to see how I am getting on. Tells me “Sorry we had to do that to you, your organs were about to fail.” “Oh, that’s ok!” I brightly reply. Oh, blissful morphine had taken me even further away with the fairies .

A midwife arrives to express some of my colostrum for Hugo. Precious protection for my little boy. One thing I can do for him.

I feel totally helpless. There are so many beeps and alarms on this ward. I cannot move.

In intensive care

Martin says how amazing Hugo is, a beaming smile. I have photos of him. Precious photos. I want to see him myself. I cannot wait to be with my baby.

Friday morning arrives. I am told I can leave intensive care, and return to maternity high dependency. I will be taken to see Hugo on the way. I cannot wait.

Time ticks away on that Friday. For the previous day and night I had my own dedicated nurse, and now I share her with another patient. They take up most of her time.

I feel alone, helpless, and want to see my baby more than anything else in this world. Why do they not understand?

I ask, so many times. Nurses make calls. A problem with the bed I need. I do not care, I want to see my baby. My baby needs his mummy, I need my baby. No one takes me. No one does anything about it.

By the end of the afternoon I ask the nurse caring for the patient next to me (bizarrely, my nurse’s other patient is at the other end of the ward) if she knows when I will be taken to meet Hugo. I do not remember her exact words, but they were to the effect of “Pipe down, there are other patients much sicker than you on this ward.”

I am so upset. I am in a hospital a long way from home. I do not even know what this hospital looks like. My body has not been my own this week. I need care, compassion, understanding.

Eventually, at around 8.30pm they decide they will take me in a wheelchair to meet Hugo. At last! It is a delicate operation, I am swollen like a Michelin man, I have wires going into me and going out of me. I am not able to move alone, and have not mobilised since the C section. The curtains around my bed are drawn to preserve my modesty.

Some of my beautiful bruises.

Suddenly Martin’s head appears in a gap between the curtains. I am not to worry, he says, but I need to come quickly. I can read the look on his face: there is much to worry about. I make him tell me: Hugo’s blood pressure is declining, and nothing they are doing is working. They are worried they are losing him.

I shriek. Shout at the nurses with their faffing. They are trying to be gentle with me, I know, but I am unspeakably furious at them for the time they have taken to take me to see Hugo. I am terrified he will die before I get there.

The nurse wheels me along the corridor. People get out of the effing way! Don’t they know my baby is dying? The wheelchairs are as bad as supermarket trolleys, she wheels me into obstacles. The pain shoots up in to my stomach wound. Martin takes over.

Cheeky Hugo, kicking away and grabbing his wires.

We get to the neonatal unit. Hugo’s nurse and consultant introduce themselves. They had been frantic, but the little monster’s blood pressure corrected itself the moment I arrived.

Little Hugo Boss knew exactly how to get what he wanted. His mummy.

I shrieked again when I saw him. So small, so red.

The consultant told me to open the porthole, touch him, get my mummy germs on him. I didn’t want to, I thought I would break him, but I did, I reached in with my hand and my son gripped my finger. It was the most amazing moment ever.

So began the most beautiful and the most terrible 33 and a bit days of my life. Hugo lived for 35 days, but I missed a day and a half of it.

A cuddle with Mummy

That was Friday February 21 2014. Ten months ago to the day. There are many parts of the story I do not remember, but the terror of that wheelchair journey and the ecstasy of finally meeting my son are two moments that are etched in my memory forever.

I made a formal complaint: the written reply felt flippant to me, that they did not fully understand the gravity of the situation, the potential implication of their inaction. I met with representatives of the ward a couple of months later and read them the riot act. They will never forget me, nor Hugo. No other mother should experience that. Having HELLP syndrome and everything else that went with it was bad enough. That was unavoidable. My life was saved, Hugo given the best chance. I am grateful for every moment I had with Hugo.

Hugo, Martin and me

But what happened on that ward that day was entirely avoidable.

I have felt a compulsion to write this today. I don’t know why: perhaps I just need to get it out of my head, in a raw, visceral way.

I know I am lucky to be here. The ‘heartburn’ and pain under my ribs was my liver in serious trouble. My kidneys weren’t doing well either. My blood pressure was far too high and my platelet level far too low.

Here I sit, 10 months later. Physically sound, thanks to the actions of the wonderful maternity, obstetric, anaesthetic and pathology teams of two hospitals.

Emotionally, I am still trying to process it. Pregnancy is supposed to be a natural event. I know bad things can happen during pregnancy: babies lost, babies tragically born sleeping. But the placenta turning your body against you? The placenta sending toxins around your body, shutting down your organs. I know now it is not my fault, but it does not prevent me feeling guilty.

HELLP. What a crappy acronym.

There is nothing helpful about it.

It is a difficult thing to get your head around.

Proud Mummy alert: what a beautiful boy!

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Birth trauma and PTSD – Raising awareness

darkest-passages-the-heart-is-unconquerable-dale-pelzer

When people think about post traumatic stress they often think of a soldier, returning from battle traumatised and battered by the ravages of war and the terrible things seen and experienced.

However PTSD doesn’t only affect those affected in the aftermath of war or a terrible natural disaster or violent act. PTSD can also affect someone in circumstances that should be safe, that should be happy, that should be the start of an amazing journey. For some women the birth of their baby can be traumatic and can be a trigger for PTSD that can severely affect their life. It can affect bonding with their baby, relationships with family and friends, doing everyday activities and physical health. So what is birth trauma and PTSD and how can we help and support women that are suffering?

Firstly what is birth trauma?

Birth trauma is in the eye of the beholder’ (Cheryl Beck) and this is true. What is traumatic to one woman may not be traumatic to another woman. Each woman’s experience of birth is unique to her and many things can add to a woman feeling her birth was traumatic. For some it maybe that her birth was a truly scary event, she may had been in an emergency situation where her life and that of her baby was at risk. Maybe her labour was very lengthy and very painful. It may be that a woman’s birth had high levels of medical intervention, such as induction, caesarean section, episiotomy, or other medical issues. It may be that a woman gives birth early and her pre-term baby requires care in NICU. Sadly some women have a birth that results in damage or injury to her baby and some lose their babies at birth.

For other women trauma can result from the way she is looked after by the staff responsible for her care both during the birth of her baby but also postnatally. She may feel a loss of control, dignity and privacy. There may have been a lack of information or a woman may feel she wasn’t listened to and her choices not respected or overlooked. She may feel she had medical procedures done without her consent or without proper explanation or that she was left with no choice. Or maybe unkind, cruel words and actions made her feel vulnerable and exposed.

Some women find birth triggers or adds to previous trauma such as rape or domestic abuse.

Often women who feel traumatised from their birth will feel isolated, other women may not understand why she feels traumatised, after all isn’t childbirth a ‘natural thing’? So a woman can feel guilty and somehow ‘weaker’ than other women for being unable to ‘cope’ with birth . She may feel she should be over the ‘birth’ and often well meaning friends and family will say things such as “at least you are ok and you have a healthy baby”. This only confounds the woman’s feelings and makes her feel more isolated and can damage relationships with partners, family members and friends as a woman feels no one understands and so she withdraws deeper into the trauma. Depending on the nature of the trauma a woman may feel unable to have further medical tests such as smear tests. Sex may also be affected as a woman may fear further pregnancies, or even just the act of physical intimacy itself. Many women who suffer birth trauma may struggle to bond with their baby, others become overly anxious of their babies health and wellbeing and constantly worry about every aspect of caring for their newborn.

For a woman that has lost a baby during birth or whose baby has been injured during birth she may experience overwhelming guilt, she may feel like it is her fault that she somehow failed her baby or that she should somehow have prevented it. She may play over and over again the birth in her head seeking answers or ways she could have changed the outcome.

Feeling like they have no voice, are misunderstood and weak many women will seek to hide their true suffering and ‘carry on’, the weight of trauma bearing down on them crushing hope, light and happiness as they try desperately to cling to normality. Everyday tasks become hard and just coping day to day can feel overwhelming. Their physical health too may suffer, as the effects of trauma ravage them mentally. Lack of sleep, trouble eating and the constant struggle all takes its toll. Flashbacks may take them back to the event reliving moments, even smells and conversations causing great distress and anxiety.

So what is PTSD and how does it differ from postnatal depression?

Often women can be wrongly diagnosed with PND when in reality they have PTSD.  While PTSD and PND can overlap as they do have some similar symptoms, they are very different. Its important that a woman receives a correct diagnose so she can have the support, help and therapies she needs. PTSD is the clinical term for a set of normal reactions to a traumatic, scary or bad experience or event. It can occur after a person experiences or witnesses something that was or they perceive to have been life-threatening.

Signs of PTSD include:

  • Feelings of intense fear, helplessness and/or terror.
  • The re-experiencing of the event by recurrent intrusive memories, flashbacks and/or nightmares. The individual will usually feel distressed, anxious or panicky when exposed to anything which remind them of the event.
  • Avoidance of anything that reminds them of the trauma. This can include talking about it, the place where the trauma happened or people that may have been involved in the trauma. (such as hospitals, doctors, healthcare professionals) Even T.V programs or books maybe avoided.
  • Bad memories and flash backs often result in difficulties with sleeping and concentrating, thus affecting daily activities. Sufferers may also feel angry, irritable and be hyper-vigilant or jumpy, easily startled.
  • Suffers may suffer panic attacks, depression and anxiety. They may feel detached, alone and have a sense of something bad may happen to them or their loved ones.

It is important to remember that PTSD is beyond the sufferer’s control. It is the mind’s way of trying to make sense of an extremely scary traumatic experience and are not a sign of an individuals ‘weakness’ or inability to cope. The person cannot just ‘get over it’ or ‘pull themselves together’ or ‘move on’. Rather they need help and support to process not only what has happened to them but also the feelings surrounding it.

So what can help a woman who has suffered birth trauma or PTSD?

For partners, family and friends its important to acknowledge what has happened to the women and her feelings surrounding it. Encourage her to talk about her feelings if she is able to. Help her to see you want to try to understand how she is feeling and that you recognise how traumatised she may feel.  Reassure her that you are there for her and that you will help in anyway you can. You maybe the only person that she trusts. Encourage, commend show compassion and empathy. Emotional support is invaluable, even if it’s just a listening ear or a hug. Realise that there may be things or activities that she may not yet feel ready to do, be patient and show understanding.

Encourage her to get help, whether it be her GP, health visitor, midwife or a charity such as the Birth Trauma association or Mind. This will not be easy as she may have a fear and distrust of telling anyone how she really feels especially a healthcare professional. Reassure her of your support, maybe offering to attend any appointments with her if she wishes. Asking for help will be hard, and so will the time undergoing any therapies being there for her providing emotional support is so important.

Also, helping with daily activities can mean so much, helping her get much needed rest offering to prepare a meal, or to do some shopping can also be invaluable.

Helping someone with PTSD can be difficult and frustrating.Partners and family can feel lost and confused too. Reading up on PTSD can help you understand it and how it can affect someone that is suffering.

Of course some partners too can feel traumatised and suffer from PTSD after seeing the birth of their baby. It is important they too seek help and support.

What about healthcare professionals?

Its important that any healthcare professional’s when supporting a woman after birth build a relationship built on trust. LISTEN, this is the single most important thing to a woman who is suffering. Listening enables you to truly know what she has been through, how she is feeling and whats important to her and her family.  Listening will enable you to know if she is likely to be suffering PTSD or any other perinatal mental health disorder. Listen also to her partner and family, they know her best, if they feel something isn’t right or reach out for your support then be there.  Ask for training in order to help you understand the different types of perinatal mental health issues and know the pathways and any local support available to signpost a women to.  Be careful of language used and do not minimise her feelings or experience.  If you know a woman has had a traumatic birth from postnatal notes etc, ASK, don’t ignore it.

What can a woman who has had birth trauma/PTSD do for herself?

  • Speak to someone, partner, family, friends, midwife, health visitor, GP. Don’t suffer in silence.
  • Remember you are not alone, there are others too that have been affected by birth trauma.
  • Remember you are not to blame.
  • Look after yourself, make sure you rest and eat a good balanced diet. Do things, activities that help you to relax.
  • Know your limitations and what you can do both physically and emotionally.
  • Speak to your hospital about your experience. Some women ask to see their medical notes and discuss exactly what happened to them and why.
  • Seek help and treatment. There are various treatments for PTSD such as counsellingEye Movement Desensitization and Reprocessing (EMDR), cognitive behavioural therapy (CBT) and medication.
  • Find local support groups or support groups on social media (such as birth trauma facebook support page)

Birth trauma is real and so is PTSD, its important that women get the help and support they need to overcome it. The birth of her baby can affect a woman for the rest of her life, it may not be possible to completely prevent birth trauma but what we can do is support women when things do go wrong and make sure that we show them love, compassion, kindness and help even at the darkest times so they believe that it will be possible to bathe in light again.hafiz-quote1

my story of birth trauma

Emma Jane Sasaru

@ESasaruNHS

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The many faces of birth

Natural-Childbirth-tips-for-Pregnant-Women

Ive seen lately many discussions on birth and it got me thinking. Birth has many faces and no one situation prevails, it is as individual to each woman, baby and family as a fingerprint. Often things such a ‘risk’, ‘normal’ and ‘natural’ are mentioned along with ‘informed choice’ and ‘statistics’. All this can be banded about and yet is birth really that simple?

Of course the answer is no, birth can be very straight forward but it can also be very complicated and so providing care, support while respecting individual choice can be difficult. What do I mean?

Well I can see there are many faces to birth. Firstly the ‘positive natural’ side of birth that we hear so much about. As I trained as a doula I learnt so much about the human body its ability to birth and ways that a woman can help herself during the stages of labouring. I truly believe that giving birth can be a wonderful, momentous, truly beautiful event during which a woman can, by listening to her body, birth her baby safely anywhere she wishes. In fact women have been doing exactly that for thousands of years. There are many things women find helpful while in the stages of labour such as hypnotherapy, relaxation techniques, massage as well as the right environment and support. Providing information for women and helping them believe in themselves and their bodies is very important. This is often not always the case in antenatal classes where much emphasis can be on pain relief and types of interventions rather than working with your body, by keeping active etc.

However, working with women who have experienced birth trauma I also see that we must be cautious. Why?

When birth goes well and is the experience a woman hoped for it is amazing. Many times however I have heard women say that when things have not gone to plan or birth has taken a different journey to the one they had envisioned they have felt like a failure. When her baby comes early, or a labour becomes complicated, when hypnobirthing hasn’t worked or when a women hasn’t been able to give birth vaginally and birth ends in a caesarean she may feel her body has failed her. I have personally heard many women voice that they feel let down, that the reality of birth wasn’t explained to them and that they felt unprepared and almost lulled into a false sense of security believing that their birth would go to plan if they just believed it and nature would do the rest. This however doesn’t always happen, birth sometimes takes a different turn, or a woman may not manage labour like she thought she would. Sometimes there is medical complications or emergencies. When a woman doesn’t have the birth she wanted then comments like ‘whats wrong with me’ or ‘why did I fail’, ‘what what did I do wrong’ or ‘I regret my birth’ often are said. This can then result in the pursuit of the ultimate ideal birth. Or for some women it can result in a feeling of despair and sometimes trauma.

So how do we empower women but also at the same time not give a unrealistic view of birth?

The key here is knowledge that is evidence based but also realistic and takes into account each woman, her wishes, her choices but also her history, previous births and health.

We also must never put one form of birth on a pedestal as the ultimate to be achieved and as a sort of goal or prize to be attained. Why are women that have laboured for hours, attempting to birth vaginally but going on to have caesareans feeling like failures? In fact why is any woman who has had a baby feeling like failure? When did it happen that one way of birth equals success and another failure? I read recently a women asking for support after going on a facebook page where women were discussing the length of their labours and competing with each other on how long they laboured before they accepted any pain relief. The woman in question had suffered a long labour, then a episiotomy, then forceps, then a caesarean because her baby was firmly wedged and in distress. Why was she seeking support? Because she felt a failure for having accepted pain relief during her labour.

I feel like a failure

Women are then often let down after birth, when birth hasn’t gone as planned women are told “you have a healthy baby, thats all that matters” but this is not true. Birth has a profound effect upon a woman and her family, there must be support after. Emotionally it can take time to process birth and with a new baby to care for it can be overwhelming. Expectations abound as does advice. Time spent with a women reflecting on her birth can be invaluable, sometimes there can be so much emphasis on the birth itself that little time is given to thinking about after. Especially where birth has been traumatic is it important that it is acknowledged and support be offered. Reflecting on good experiences is also important as it enables learning what helps and supports a woman and helps improve care given. Its important that women know it is ok to be disappointed with their birth experience but it doesn’t mean that their birth was any less an amazing event.

This brings me on to another side of birth, the medical side and in particular healthcare professionals.

To be fair those that care for women often come in for a lot of criticism. Sometimes this is justified, I myself had very poor care after the birth of my daughter, however many are trying hard under very difficult circumstances to provide care in birth that is kind, compassionate and patient centred. Empowering women can be hard in a hospital environment. Rooms are often bright, clinical areas with lots of equipment with many staff coming and going. Language often used such as ‘failure to progress’ or ‘allowed’ does little to build confidence. Midwife led units while providing the lovely environment for birth and being available for things like water births often have such strict guidelines that few women qualify to use them. Even if women do qualify at the slightest issue they are often transferred to hospital causing anxiety and concern. At a recent support group nearly all the moms there said they had started labouring in a MLU but was transferred over to hospital. They all stated they would not try to use a MLU again as they felt there was no point as they would likely just be transferred over.

What is the reason for this almost ‘over concern’?

Im not a midwife or an obstetrician but I would imagine that being responsible for the safe birth of a baby is a heavy responsibility. No one wants anything to go wrong or a women or her baby to suffer any problems. However birth can be risky and unpredictable and so in the hast to make it as safe as possible it has in many ways become over medicalised. Rather than risk injury or death of a women or her baby doctors or midwives may err on the side of caution preferring to monitor and whisk baby out at any sign of a problem. Having procedures and policies in place makes staff feel safe and processing medical training they may see things from a very different angle to the family they are caring for. Add into this the risk of litigation when things do go wrong and it can be a mix that doesn’t allow for much movement. A woman may make a choice on her birth but if things go wrong doctors and staff may still face questioning and litigation. It may also be hard to accept that a woman is indeed making an informed choice if it seems to go against the very medical guidelines that have been set in place to keep her safe. Because of this much of the ‘natural’ way of birthing has been lost in a sea of trying to make everything ‘safe’ by checks more checks and even more checks. Of course for some this has meant the saving of their life or that of their baby, however for others it has meant they haven’t had the birth experience they wanted.

No one wants anything to go wrong

If a women came to you as a doctor requesting a vaginal birth after multiple complicated pregnancies that had resulted in caesareans likely the answer you would jump to would be to advise against it. Everything you know, have experienced, and trained for, as well as all the polices and guidance around you would be screaming in your head that this was not the best idea for this woman. But what if that was that woman’s desire and choice? What if she felt informed and educated. What if she felt she was aware of the risks?

Which leads onto another face of birth.

How far do we feel women should be able to ‘choose’ how they give birth? When everything is clearly pointing to great risk to her and her baby, or if pursuing that choice could have the potential to cause issues how do we then support a woman in her choice, showing respect and dignity but at the same time mitigate risk? Do we allow a woman to birth as she wishes knowing that it may not be safe for her and her baby?

There may be no clear answer to this and this is where the waters become muddy. It is true that a woman has the choice and control of her own body and baby. But also those caring for her have a responsibility too. Informed choice must truly be that, an informed choice. As women the onus is upon us to make sure that we truly are educating ourselves on birth before making a choice. That includes not only the way to help our bodies birth our babies but also to make sure we are prepared for the situations when that may not be possible. As women we should not try to live up to any ‘ideals’ of what a birth should or shouldn’t be. It is your birth, it is your body, it is your family, does it really matter what anyone else has or hasn’t done? Of course not every woman does this or wishes to do this and is happy to follow the recommendations of her doctor for her care, trusting that they know what is best for her and her baby. Again that must be respected and should not be looked down upon or a woman made to feel guilty because she has chosen to do so. We must also remember that we are then responsible for our choices and so its important that we truly are making a choice that is informed and evidence based.

Likewise those that care for women must be mindful of the woman. Communication is the key. Finding out what her choices are, why she has chosen certain things. Look at a woman as a whole person with her own thoughts, ideas, needs, wants and desires. This is very challenging and may seem impossible. But only by doing so can correct information and support be given that relates to that women and her circumstances. Language is very important as is respecting choice. It can be easy to say ‘but that’s what we have always advised, suggested’, but challenge your knowledge and seek to always learn more and improve care given. Fear of litigation is very real however that fear can lead to being over cautious, leaving no room for choice or movement or consideration of  individual requests. Also important is consent. No matter what the situation it is very important that a woman gives consent. Ive lost count of the amount of women who have voiced that they had procedures done to them during birth that they did not consent to but felt they had no choice. Communicating why, and making sure that a woman fully understands and consents to anything done to her cannot be overly stated.

Birth may have many faces, the woman, her family, those that care for her and other women and their experiences, but what matters is the woman herself. Teamwork, communication, consent and dignity all play a part. Women and staff who care for a women need a good relationship built on trust.

Failure has no place in birth, because no woman fails but only does her best in the circumstances she finds herself in. Birth is not a competition or a race, it isn’t the same journey for any two women in fact for any two babies. Birth is individual, wonderful and breathtaking, sometimes it can be difficult and heartbreaking but, if women are at the centre, if a women are the motive, the passion, the love, then everyone will always strive to make every woman’s birth the best it can be for HER, no matter what that may be, because for every women that will be something different.

As women yes believe in yourself and your body and your ability to birth your baby, but also be prepared that sometimes things don’t go to plan. That doesn’t mean your choices are gone, or that you have failed or that your experience is somehow less than anyone else’s. It just means your birth journey changed but with help, support and care it can still be a beautiful journey.

find-joy-in-the-journey-quote-1

Emma Jane Sasaru

@ESasaruNHS

 

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#MatExp – The Good, The Bad and The Unacceptable

When I first came across Florence and Gill and the MatExp Campaign, I knew my group would have a lot of maternity experiences to provide to them.  We are always discussing and sharing birth stories, and when I asked them for their feedback it came in abundance.  Their stories, from all round the UK, have been passed on to Florence and Gill, and also to Jeanne, midwifery lecturer at Salford University.  I have permission to share an initial snapshot with you here, to give you a flavour of the ordinary maternity experiences that are happening around the country and which, for the most part, do not get formally discussed once they are over.

The Good

This was the hardest section to find quotes for.  Not, thankfully, because I didn’t have any good birth experiences to work with, but because I was looking for quotations praising the midwives.  But when you read a positive birth story the midwives are rarely mentioned.  They are there, and their actions are noted, but they do not receive praise for their interventions, because a positive birth story is about the mother: her experience, her actions and her achievement.  Rest assured there are plenty of positive stories being shared amongst us, but in terms of positive feedback there is only a little:

“Although I ended up with a c-section after induction, pre eclampsia and gestational diabetes plus a lengthy hospital stay, I only have good things to say about my experience.  At all points I felt they were doing the best for me and my baby.  I loved the fact that, during my stay in hospital, when midwives asked you how you were feeding they always responded ‘bottle feeding, brilliant’ or ‘breastfeeding, brilliant’ – there was no obvious preference amongst the staff but they were very supportive of either.”

“When I got the epidural I had a lovely midwife waiting with me for the drip to work.  I really appreciated her calm, kind attitude – she was so so lovely and I think the fact that it was one to one care made it amazing.  I felt so well cared for.  When I started to push everyone was SO LOVELY and I felt very in control.  It was when they said I needed forceps I started to lose it a bit but they were still lovely even though I was throwing the F-word around a bit by now.  I was transferred to theatre and started to get a bit scared, but again my midwife was very reassuring.  I had a spinal block which sadly went too high and I started to suffocate. I had to have a GA and I was very frightened but seriously, all praise to the staff, they were so calm and kind.  The consultant offered me a debrief appointment and I went to it about twelve weeks later – it helped me process everything.  Whilst it wasn’t a great experience I feel the hospital did everything they could to help me and safeguard my emotional health following a scary time.”

“I had excellent care in my second pregnancy with the same midwife all the way through; wonderful home water birth and excellent postnatal care, including breastfeeding support.  A great example of how important it is having the same person looking after you and building a relationship.”

What we really want in pregnancy!
What we really want in pregnancy!

The Bad

“While being assessed I gave permission to be examined vaginally on arrival to assess my progress.  On finishing the exam the midwife said ‘you’re a good 4-5cm dilated already so I gave you a good stretch whilst I was there to speed it up.’  I had not been asked if I would like a cervical stretch.  I did not give my permission for a cervical stretch.”

“Both myself and a friend progressed very quickly once the induction took and struggled to cope with intense pains that came every minute or less.  Both of us had dismissive midwives who offered no explanation as to why the pain was so intense and why we could have no painkillers other than paracetamol.  We were both told to go to sleep (as if!) and told that if we couldn’t cope now how would we cope when labour was established – which was terrifying!                                                    Both of us coped just fine on gas and air.”

“Breastfeeding support was rubbish.  My husband showed me how to manually express milk after reading the breastfeeding book.  The support workers just shoved my boob in baby’s mouth but I didn’t understand how I was supposed to do it when they weren’t there.”

“…..another midwife was lovely and kind and murmured comforting words as she fixed the belts and monitoring equipment, then left me behind the screen.  Bossy midwife then came along and yanked back the screen, announcing that she ‘liked to see her ladies when there are being monitored.’ So I was sat with my jeans so low that my pubic hair was showing, my whole bump exposed, while a couple of women I didn’t know and their partners tried to look anywhere but at me.  I had very little shame by that point but this upset me.  It felt like punishment.”

Always use your
Always use your “B.R.A.I.N.”

 

“With my 4th baby I was still keen to have a homebirth but requested a growth scan near my due date to monitor baby’s size and check it would be safe [due to previous shoulder dystocia]. This was refused. They ‘didn’t do growth scans’. I could have a homebirth but not a scan. I repeated the request to other midwives but nobody suggested referring me or even seemed to care. I eventually found a midwife who took me seriously and referred me to the consultant. When I eventually got my hospital appointment I saw a registrar who honestly didn’t seem to know what he was doing. He said I couldn’t have a growth scan but refused homebirth in case I had shoulder dystocia again.  After another appointment I insisted I saw the actual consultant. The consultant said I couldn’t have a scan but agreed to do a sweep 1 week before my due date. In the end, I asked about a due date induction to reduce the risk of the baby getting too big as I was so frustrated at this point and nervous of baby getting stuck again. They seemed surprised but agreed, so that’s what we did.”

 

 

 

The Unacceptable

Despite the draw of a catchy title, I refused to refer to any of these experiences as “ugly”.  A new life entering the world is never ugly.  But I feel that “unacceptable” is appropriate for these two experiences, and I hope that you do too:

“My midwife asked, whilst examining me to see how far dilated I was, if I’d like a sweep.  I was in agony so I said no.  She did it anyway.  I screamed and hubby said he had never seen me look so pained before or since.  She only said ‘done now’.”

“All going smoothly until I haemorrhaged.  I was rushed to delivery and the consultants managed to stem the bleeding, with a review scheduled to decide if theatre was necessary.  There was a question mark over retained placenta/products. The placenta was torn and was not confirmed as complete. I had another procedure to stem another heavy bleed with the review still scheduled for later in the day.  A junior consultant came and decided that they weren’t going to take me to theatre that day despite still having heavy bleeding.  I had not been given any food or drink (other than water) since the previous evening.  This was 2pm on Saturday.

After this, I didn’t see a midwife (nor anyone else) for hours.  My room had blood covered surgical instruments left on the side plus the swabs etc from the procedures, my catheter came out and I was left in a soaked bed for what seemed like a long time plus the bleeding was still very bad.  My buzzer was not answered for long periods of time. I was eventually transferred to a ward at around 8pm.  Once on the ward, I continued to bleed and clot heavily.  The midwife said this was normal.  My obs were low but I didn’t want a blood transfusion unless absolutely necessary.  There was no further mention of retained placenta/products and I was allowed home after 3 days.

This resulted in four and a half weeks later being rushed to surgery to have the retained products removed.  This was after 3 separate haemorrhages which again the community midwives said just needed monitoring.  I was lucky that I didn’t get an infection.  The advice in A&E was that I should have called an ambulance.”

I have a lot more #MatExp feedback to share, too much for one blog post.  I will put up more soon.  For now I will leave you with this illustration of the discussions at a recent Families & Midwives Together Conference I attended at Salford University:

Families & Midwives Together
Families & Midwives Together

What could have been better about the care you received?

 

Helen Calvert. 2015

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Baby Loss and Communication

Being in a healthcare environment – whether that be a GP’s surgery or a hospital – can be a hugely disempowering experience. You are likely to feel especially disempowered when you receive bad news – your head spinning, struggling to take in usually complex information. Then, more than ever healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

Professionals need to be able to listen effectively, which includes reflecting back what a patient has said to check their understanding, and to make sure they understand a patient’s views.

My son Hugo was born 16 weeks prematurely because I had the life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia. My beautiful boy fought so hard, but died in my arms at the age of 35 days.

Everything possible was done to save Hugo’s life. Sadly, he was too small, and too premature.

There were, however, areas of both mine and Hugo’s care that could have been better. These issues were around communication – there were occasions where stresses could have been avoided if there had been better interaction between staff, or if we had been provided with more suitable written information.

I’m proud to be the #MatExp language champion. Effective language and communication underpins so much, and even a few thoughtless words can cause enduring hurt.

A huge thank you is owed to everyone who shared this post asking parents to get in touch about their own communication experiences around baby loss. An even greater debt of gratitude is owed to those who got in touch to share their experiences – good and bad.

It was interesting that the bad experiences reflected what I suspected – they are focused around failing to reflect that each patient is an individual, with their own hopes and dreams. The incidences of good communication are heartening.

I will take the poor first, so we can end on a positive note with the good.

One mother had a medical termination because her baby was diagnosed with a condition that meant they sadly would not live. I was appalled at what the mum had to say:

We were ushered in to see a male consultant. He obviously did not have adequate time to spend with us. Everything he said felt like one more thing he had to tick off his to do list. His comment: “at this point, I have to say that I’m sorry for your loss” was the least genuine and sympathetic expression I have ever heard in my life. He then followed this by referring to our baby, OUR BABY, as the “retained product of conception” and the loss of our baby, THE LOSS, as “the event”. He sickened me!

Another mum said:

…we had decided to have an amnio. We explained this to the Community Midwife (whose first words as we walked in was ‘oh this will be an easy appointment’….how little she knew!) Her response? ‘But how would you feel if you lost it and nothing was wrong’ said in a very judgemental way. As if we had not consider the risks…..I left the appointment gobsmacked she could be so insensitive and was so upset, I sobbed all the way home.

A woman who had a miscarriage said:

He then flippantly answered my questions in a nonsensical fashion. “It would hurt no more than a period” (I found labour easier, was offered pethidine for the pain all whilst being physically sick). “I wouldn’t need to stay the night” (ummm…I did…. “I wouldn’t bleed much” (not true). And my personal favourite: “no, you don’t need any medication now. Go home and just turn up at any point on Friday and we’ll deal with you.” (15 minutes later and in a taxi on our way home I noticed numerous missed calls. As we thought, I had needed to take the first of my tablets and was asked to return to the hospital as soon as possible.)

The two examples around my own experience include when discussing Hugo’s end of life, in my distress I cried how guilty I felt. The consultant said:

All mothers feel guilty.

That may be so – no mother of a premature baby, or a baby that dies for whatever reason is at fault. Knowing that does not diminish our sense of guilt, and that comment felt very dismissive. I wanted to talk about why I felt guilty, and be listened to.

The other example relates to a midwife from my local hospital phoning me the day after Hugo died. In a cheerful voice, she asked how I was. I replied that Hugo had died the previous evening. It was evident she had not heard me, because continuing in that cheerful voice she said “Oh ok, I understand you are at home now, would you like a visit?” Even if Hugo had not died, the tone and content of the call was inappropriate. Hugo would have been 29 weeks at that stage and while the unit that cared for him is excellent, there is no way he would have been home by that stage. It seemed to be a failure of checking the notes properly.

These are all examples of health care staff using jargon, and impersonal medical terminology. I am sure (and hope) these staff did not intend to be impersonal or insensitive. I am sure (and hope) these staff simply failed to put themselves in these women’s shoes, to consider how they were feeling at such a sad and difficult time, and to offer empathy. In the example of the midwife who phoned me, she needed to have used a different tone to the one she would commonly use with the happy events of mums at home with their healthy babies.

Effective communication is something I am passionate about, for the benefit of patients – I have worked in the profession within the NHS for several years.

Thankfully, we do have positive examples of communication to talk about.

The woman who had a miscarriage gave this emotional account:

The ward matron ushered us into her office and apologised profusely. She gave me my tablet and then offered to answer honestly any questions we had. We went over everything again but this time we received compassionate and truthful answers. “Yes, it would hurt lots but you will be offered pain relief”. “You will need to stay the night”. “It will be hard but we will be here to help you get through it”.

In the digital age, most of us will take to Google to explore our diagnosis and prognosis to find out more. Of course, while the internet has many useful, trustworthy sites, there are many that are complete rubbish (this is true of every condition, not just baby loss).

As one mum said about her baby’s diagnosis

Probably the worst thing I did was google the condition when I got home.

I found the same about HELLP syndrome – it is so rare, there is little information about it, and much of what I read was terrifying – not helpful to my emotional recovery.

Patients need to be guided towards trustworthy sites. I was heartened to read that as the result of the involvement of a bereaved mum, one hospital’s website has “information specifically about fetal abnormalities as well as details of the team of people who will be looking after them. When they leave the hospital after diagnosis they are given the website address and the number of a counsellor so they can look at it when the shock has worn off”.  The website also has some links to recommended forums.

Happily, I do have examples of better communication of my own to share: consultants (both obstetric and neonatal) listening to me, and patiently answering my questions without patronising being an important one. Vitally, I have found the majority willing to listen to and take on board my feedback, and seek to reflect on their practice and make changes were appropriate.

That is heartening progress, for the benefit of other women during the heartbreaking time of losing a precious baby.

Language matters, always.

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Language Matters!


A short film by Gill Phillips

Being in any healthcare environment for any reason can feel disempowering for a patient. Effective communication between healthcare professionals and patients can help build trusting relationships, improve patient outcomes and patients’ experiences.

Communication is at the centre of everything, and no more so than in a healthcare environment:

MatexpwebinarlanguageLeigh

That is why I have chosen my NHS Change Day action for the #MatExp campaign to centre around language.

As part of my action I will:

  • Continue to raise awareness of the importance and impact of effective communication – verbal and written – through all appropriate channels (including my blog, on social media, engagement workshops, for instance). While healthcare communication is important in any specialty, as a result of my personal experiences my focus is on maternity and neonatal unit environments.
  • Empower women to feed back about their experiences – positive and negative – to help health care professionals improve patient experience (part of this action includes discussing how to make the process of giving feedback easier, and meaningful).

I have been proud to be involved with the #MatExp campaign for the past few months. #MatExp is a campaign led by healthcare professionals and users alike, aimed at identifying and sharing best practice across the country’s maternity services. If you check out the hashtag on Twitter, you will see it has already been generating lively discussion about what needs to improve.

My passion for appropriate language and effective communication stems from my years of experience as a communications professional in the NHS. This passion was enhanced as a result of my personal experiences as a patient and as a parent in 2014.

For the benefit of those unfamiliar with my story, in February 2014 I was diagnosed with the rare, life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia when I was just 24 weeks along. The only cure is for the baby to be born, and my son Hugo was born 16 weeks early. My beautiful son was too small, and premature and sadly died at the age of 35 days.

Raising awareness of HELLP syndrome was the inspiration for my pledge for last year’s NHS Change Day.

Me and Hugo

While nothing differently could have been done from a clinical perspective, there were several incidences where our experience could have been less stressful, and additional upset avoided if there had been better communication. That is why I set up Bright in Mind and Spirit (it is what Hugo’s name means), to raise awareness of these issues.

This slide explains more about why language matters, and why healthcare professionals should care about getting it right:

Slide3

Feedback from many other women on social media and through their own blogs reveals I am not alone in wishing for better communication in my maternity experience. These women had every kind of pregnancy and birth experience you can think of. The one thing we share in common is the impact poor communication and choice of vocabulary by healthcare professionals had on our maternity experience.

Language can have an enduring impact, with things that were said to women when they were giving birth to their babies staying with them many years later.

This slide describes the language we want to ban, and the kind of language we would like to see more of:Slide2

Medical jargon can be confusing and bewildering. In addition, some terms may impact a woman’s self-esteem.

Terms like ‘failure to progress’ and ‘incompetent cervix’ might be perfectly proper medical terms, not intended to be personal. But think about it for a moment: these terms describe a woman’s physiology. Women therefore cannot help but take personally such terms. In the context of pregnancy, where expectant mothers want to do everything possible to protect their babies, such words can inadvertently convey a sense of blame, leading the woman to feel she a failure or incompetent, rather than elements of her physiology that are beyond her control.

The words and terms in this column can make a woman feel like she is not in control of her body, her care, or decisions that are made. A bit of a walking womb. Doesn’t sound very nice, does it?

The examples given in the ‘language we want to see more of’ column outlines some simple ways to help a woman feel more in control of her body, an equal partner in her care, and involved in decisions. Sounds much better, doesn’t it?

Healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

There is so much discussion around language in maternity services. For instance, women have raised points about choice (some women have little choice about how or where they give birth, for a variety of reasons); risk (which sounds scary – often it means only ‘possibility’); and ‘normal’ birth (the notion that there is a ‘right’ way or place to give birth). The vocabulary we use to describe birth is crucial for helping women feel equal and empowered. It could also help remove the polarisation of views between ‘normal’ birth always being best, interventions always being harmful, and take some of the fear out of the delivery room.

Empowering women to feed back about their experiences is the second part of my action. Healthcare professionals may not always be able to recognise that experience needs to be improved, unless they receive feedback. The problem is, the traditional feedback processes can often be onerous, stressful and result in unsatisfactory results for the complainant.

The NHS complaints process is complex, for many reasons, and can include cases of straightforward feedback to serious incident investigations and everything in between. The whys and wherefores of the complexity of the process is not a topic for this post. However, there are some simple considerations individual providers can implement to help the complainant feel like they have been listened to, been taken seriously and that they matter.

My personal experience of the complaints process from a hospital, a GP practice, and a mental health provider is the opposite. More stress and upset was caused by written responses that were impersonal, formulaic, and failed to acknowledge the impact the experiences had on me. The tone of the letters felt like board reports, and that the response had to be written so it could be added to a chart.

People composing these responses need to take a step back and appreciate that while there are statutory points to be made, facts to be stated, the recipient is a human being with feelings that do not fit into a chart. Think about the language of the letter and how things are phrased to help the complainant feel like they have been listened to, been taken seriously, and that they matter. Where appropriate, also advise the complainant of actions that are being taken as a result so they can be assured taking the effort to give feedback was worth it.

It is difficult to write this post without some reference to the Kirkup Report. There is so much I could write about it, but this post from Birthrights provides a useful insight into the impact that communication had on the care of women and babies at Morecambe Bay – with tragic results.

Improving language and communication will take time, and a shift in culture. In many cases there are no easy answers. However, recent social media discussions (with midwives, obstetricians, professionals from other specialties, as well as other users) about language have been heartening. It is heartening because the discussions between healthcare professionals and users have happened, and on such a public forum. It is heartening to see language being thought of, and the link between communication, outcomes, and patient experience being recognised.

The main point to remember about communication in healthcare is to consider how you would like to be treated yourself. You’re likely to want to be treated with compassion, empathy and respect, aren’t you?Slide4

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