Maternity Experience

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.

Share the Word About MatExp!

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

Share the Word About MatExp!

MatExp and Hugo’s Legacy

A significant part of Hugo’s legacy includes improving experiences of maternity services for women who have a traumatic birth, and/or whose baby is cared for in a neonatal unit. My particular focus is on making sure language, communication and information is clear and effective at this time, which can be bewildering and upsetting for mums (and dads).

Twitter is a fantastic networking resource, and for the past few months I have been tweeting with a group of health care professionals (HCPs), NHS change agent folk, and other women who, like me, are passionate about helping improve other women’s experience of maternity services.

I was delighted to meet Flo, Gill, Kath, and Carolyn after tweeting for so long. Being able to talk in sentences longer than 140 characters was refreshing! My good friend Michaela was also at the event, and it was lovely to catch up with her.

There are a series of #MatExp events, which seek to get service users and HCPs together to discuss experiences. I went to an event at Queen’s Hospital in Romford, which is part of Barking, Havering and Redbridge University Hospitals NHS Trust.

It is an impressive hospital: the reception airy is airy and colourful. Someone was even playing a grand piano.

The attendees for the event included trust staff from a range of professions and grades, as well as service users. We were sat on round tables: when I introduced myself, I was amazed that someone on my table said they followed me on Twitter. Hugo’s story is getting around!

A comment in the opening speeches about “pregnancy not being an illness” raised my hackles. Yes, for the vast majority of women pregnancy and birth is a natural, wonderful life event. But for some women, pregnancy and birth can be a source of great trauma. Indeed, pregnancy can make a minority of women very ill indeed, as I can attest.

The speech was full of aspiration and positivity, which is understandable in the context of the hospital seeking to become one of the country’s highest-performing maternity services (a few years ago they ranked amongst the worst). However, speakers do need to be mindful of the range of women who are likely to be in the audience. Pregnancy and birth does not always go to plan – there are times when it is unavoidable, it is no one’s fault, and women like me do appreciate this being acknowledged. That’s my soap box moment – it is a point of sensitivity.

Each table played the Whose Shoes game. The game is simple – you roll the dice, move your shoe around the board, and discuss the scenario related to the colour shoe you land on. The scenarios involve getting in the shoes of a mum, or a range of HCPs.

The Whose Shoes Game in action.

My table’s scenarios generated some interesting discussion. For example, we talked about perception around labouring women being ‘not allowed’ to do certain things. The HCPs said they never knowingly say women are ‘not allowed’ to do anything, which is interesting in terms of perception.

In any healthcare setting, a patient may feel disempowered, and feel like they have to do what they are told. Think of transactional analysis: even if the HCP and patient might have an adult/adult relationship in a social setting, a healthcare environment can transform that relationship to a parent/child relationship.

Think about how parents tend to talk to children. The children are given parameters, boundaries, and if they disobey they may find themselves at the receiving end of a wagging finger or sharp tongue. That’s not fun as a child, and even less so as an adult. It’s a key example for HCPs to consider language – what they say, and how they say it.

Of course, as the table discussed, there are some situations where women are told they shouldn’t do things, and for good reason – for example, directly before or after a Caesarean section. In any such situation, the table agreed, it is vital for the HCP to explain the reasons, as well as any suitable alternative options and what they might mean. The HCP can use active listening (paraphrasing what the woman has said) to check their understanding. That doesn’t take long, costs nothing, and has the benefit of helping the woman (or any patient) feel like an equal partner in decisions about their care.

Equality was the subject of another scenario. The scenario related to the needs of minority ethnic women, but sparked a wider discussion about equity of care. The consensus was that women should not be treated equally. That might sound counter-intuitive, but think about it for a moment: every human being is an individual, with their own individual hopes, dreams, fears and needs. In a maternity setting, you and the woman in the bay next to you might be there for the same reason, but because you are each unique individuals your needs are unlikely to be the same.

For example, I was treated differently in some ways to the other mums when I was in the post-natal ward after giving birth to Hugo. I was grateful for the private side room, meaning I avoided being in a bay with mums who had their babies with them. However, the staff didn’t consider all my needs as a new mum whose baby was being cared for in the neonatal unit: I was left waiting for too long to see the doctor on their rounds, for instance, which meant I missed precious time with my seriously-ill baby.

The event concluded with the key points from each table’s discussions included on a giant piece of paper by a graphic facilitator. You can see some of the points in the photo below. Appropriate care for women like me who have had a traumatic birth and/or whose baby is in a neonatal unit is a focus for me and I would have liked to have seen more on that. However, if there is an overall focus on doing everything possible to meet individual women’s needs, as well as other points of feedback, then this will hopefully improve as part of that.

There was then a challenge to decide what the hospital’s maternity services wanted to be known for. I was relieved the suggestion of ‘a positive birth experience for every woman’ wasn’t accepted, because they would be setting themselves up to fail and more importantly, setting women who don’t have a positive experience (for whatever reason) to feel like they have failed. “Having pride in our delivery of care with excellence” was the chosen slogan. While positive, I am on the fence about it (it is pretty standard) but to be fair it was chosen quickly by mass of people who were at the end of a long day.

 

Share the Word About MatExp!

A is for Action; B is for Bold; C is for Crazy! The #MatExp ABC has been a bit … D for Dynamic!!

Have you been following the #MatExp journey?
Have you been following the #MatExp ABC?

It has been so exciting and so so full on that I haven’t had time to write a blog about it – and I don’t think anybody else has either! But it has been absolutely compelling, with people waking up early each day to post words that reflect key issues around improving the maternity experience of women, sharing good practice examples, building our inclusive community – and having a lot of fun!

I made a visual story book at the weekend using Steller. I should be able to embed it here but can’t get the code to work so here is the link. It was inspired by a walk in the woods on Saturday and has been very popular. It is published today in the Stellerverse…! (No idea what that means except that I guess people like it!)

I cannot possibly do justice to what has been happening in our #MatExp ABC.

There is something about ideas that my #MatExp ‘partner in crime’ Florence Wilcock has which mean that they ‘go a bit viral’ and turn into something way beyond our wildest expectations.

A very small pilotI should have been warned. The very first phone call I had with Florence resulted in us starting a collaboration that has turned into #MatExp. Florence wrote neatly in her ‘little black book of serious ideas’ that she envisaged just ‘a very small pilot’.

Six months on now, we have run 5 Whose Shoes? workshops across London in partnership with the London Strategic Clinical Network and NHS England, and a Train the Facilitator session attended by people from most of the London hospitals and much further afield.

We are now starting to plan equivalent sessions with creative people who ‘get’ the process and are sufficiently open and transparent to embrace it, in other parts of the country. There is a particularly exciting workshop in Guernsey at the end of next month.

So when Florence got that glint in her eye and said she had been thinking about a #MatExp alphabet – one letter a day; Florence leading with one or two words and people invited to join the conversation… I should have had some idea of what was coming!

We have had contributions from so many people. A deluge of tweets every day, and fantastic learning in terms of things that really matter to women, shared with passion and love – or sometimes out of pure frustration.

I have compiled a cross-section of tweets into a Storify, trying to bring in something from all of the main contributors but it has not been easy – please let me know if I have missed you!

The Storify is just a flavour – for the full story, look on the #MatExp hashtag.

#MatExp is a very small pilot. We know that because Florence wrote it in her book so it is evidence-based. So that makes it true… Hmm.

Conversely we struggle to record everything we are actually doing – because we are too busy doing it. #irony

So click on the link to the Storify to feel the passion, the energy and the camaraderie of our shared purpose in #MatExp – and then join in! 

Z may be the last letter of the alphabet but it is only the beginning of the
#MatExp campaign 😉


With special thanks to my friend Ken Howard, who happens to live with younger onset dementia and breaks  every stereotype in the book,  who very kindly designed a logo for us. No meetings, no prolonged agonies, no massive expense (thinking British Airways here)… just a simple request and a quick ‘JFDI’ response, with three different versions. And everyone loves it. Thank you Ken!

Share the Word About MatExp!

1 8 9 10