Snapshot of the Maternity Experience Campaign – In Numbers and Graphics

For what began as a ‘small pilot’, the Maternity Experience campaign (#MatExp) has been going really well…! I originally published on the MatExp website; I am so proud of everything the campaign and the passionate community behind it has achieved I wanted to feature it on my own blog, too to further spread the word.

Here are some quick facts, figures, and graphics:

  • Since the website was launched in June, we have had more than 7,000 hits!
  • There are more than 700 members of the #MatExp Facebook group, generating very constructive discussion
  • We had 24 action selfies for #FlamingJune
  • 16 posts added to our action linky during #FlamingJune

We tried to capture everything from #FlamingJune in a picture – there’s so much but we gave it a go!

  • #MatExp has seen more interaction on social media than ones about similar issues (not that it’s a competition, but what is so brilliant about #MatExp is that there is no limit to the number or type of people who can get involved because it’s by everyone, for everyone).

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This next stat is VERY exciting:

  • Since #MatExp started being used as a hashtag there have been – drumroll please…

numbers

Yes you read that right – more than 152 million!

(Impressions means that Tweets bearing the #MatExp hashtag would have been seen on that number of timelines)

Guys and St Thomas’ Hospital held a Whose Shoes workshop, and seems to have inspired everyone who went, with 100% of attendees saying it would impact on their practise!

Members of the #MatExp community have been busy putting into action improvements relevant to their own hospitals:

Being the language champion, I’ve been heartened to see so much chat about the issue with people from all sorts of professions and specialties taking on board the importance, value and impact of language.

I love this:

Other language – such as ‘allow’ and ‘fail’ can have a devastating, enduring effect on a woman.

Culture can take a while to transform, of course, but the fact that we are able to have such conversations, and so openly too is a very positive start indeed.

I was delighted to find this paragraph below on a site called lulubaby, which offers a range of courses to ‘prepare you for life with your baby’.

Words of common sense – “…you cannot sadly guarantee yourself a ‘natural birth’, even with the greatest willpower and determination…” fill my heart with joy. No mention of ‘low risk’ or ‘high risk’ either – let’s hope such common sense becomes much more common!

lulu

Never forget….

I am incredibly proud to have been named in the HSJ’s list of Patient Leaders, along with Ken Howard who designed our brilliant logo, and Alison Cameron, revolutionary extraordinaire.

Later this week week, I’m attending the listening event, the first of the National Maternity Review team’s activities. I’m going to be there as part of #HugosLegacy as well as #MatExp – I’ll be sharing my own experiences as well as thinking about how #MatExp can connect with the National Maternity Review team to make things happen. Flo and Gill are coming too – we spend so much time connecting on social media, it’s great to be able to catch up face-to-face sometimes too.

So! We’ve been rather busy. Which is why we have been seeking ways to create more hours in the day, such as getting a job lot of time-turners, like Harry Potter’s Hermione.

And we’re going to need them, because after the summer we have LOADS of exciting things going on, such as NHS Expo, and a #MatExp conference – watch this space! I’m looking forward to meeting even more of the #MatExp community at these events, many of whom have become friends.

All of the #MatExp community are busy doing something positive every day, of course. A huge THANK YOU to everyone.IMG_20150526_190834So many people are taking the time to get involved, sharing stories with the aim of making a difference to women, babies and their families. Forget-me-nots are very special flowers!

There is so much going on – Helen, Emma, and Susanne are also capturing as much as they can in their fab posts; it’s impossible to capture everything, but please know that every action and activity, whether big or small is greatly appreciated.

A couple of final thoughts…

You don’t need to ask for permission (besides the obvious!) – JFDI!CJAnPM5WUAEeFjI Some wonderful people who have offered their help have said they’re not sure how valuable their contribution can be because they don’t work in the NHS, or they don’t know much other than their own personal experience. EVERY CONTRIBUTION IS VALUABLE, AND CAN HELP OTHERS! So, always remember…

CJ5AgxgWIAACyso

In Appreciation of All That Is Good

A post in appreciation of the positive things that have happened this week:

– Lazy day on Monday.

Self-care time on the sofa with my Kindle

Self-care time on the sofa with my Kindle

The reason for the lazy day wasn’t so good: a very low mood, unsure of what to do with myself. Fortunately Monday was my no-work day this week so I was able to do some self-care. I read my book: some fiction on my Kindle, and the amazing Flourish Handbook by Cheryl Rickman, which contains these words of wisdom I thought you, dear readers might appreciate too:

 

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I also settled down to watch a film I had wanted to watch for a long time, the classic All The President’s Men. Which leads me to my next point:

– Google!

I am old enough to remember life before Google and social media, but watching All The President’s Men gave me a reminder of how much we now take this technology for granted, and how quickly we forget life before having so much information at our fingertips.

If you haven’t seen the film, Robert Redford and Dustin Hoffman play the Washington Post reporters who uncover the Watergate scandal of 1972 that led to the resignation of President Nixon in 1974. They hunt for evidence, leads and sources using telephone books, and have assistants poring through clippings files for sources’ backgrounds. So much legwork that could be done today in a matter of minutes.

(There is another point to appreciate: such vibrant newsrooms for print media are rare, sadly, with the growth of online news).

– My work (‘proper job’) and my colleagues

My dread of returning to work made me feel incredibly anxious, but thankfully so far the anticipation was much worse than the reality. I call it my ‘proper job’ because #HugosLegacy and #MatExp are like jobs in themselves, but the ‘proper job’ is the one that pays the bills!

I feel very fortunate working on patient experience projects – my love, my passion – and to be making a difference as part of my job. A privilege. I am also privileged to work with wonderful, caring people who love me for being myself.

A meeting with the wonderful Kath Evans yesterday was thoroughly appreciated, too. I really enjoyed the opportunity to chat in person, and left bouncing with positivity and ideas I can’t wait to tell my colleagues about – and get in to action at work.

Kath and me

Kath and me

– #HugosLegacy and #MatExp

Hugo’s Legacy grows more and more by the day. Wednesday brought a trip to London to attend a neonatal clinical outcomes meeting as a parent representative: I was pleased to make a positive contribution, and for that contribution to be appreciated.

This week I received a number of emails and social media messages from readers saying how much my writing had touched them, or helped them in their own grief journey. Why We Need To Reconsider How We Engage With Bereaved People, and Moving Forward, Not Moving On seem to have been particularly resonant. To know that my writing – and therefore Hugo’s Legacy – is appreciated and having an impact is wonderful.

To date, #HugosLegacy has had nearly 100,000 impressions on Twitter (‘impressions’ means that tweets bearing that hashtag have been delivered to that number of timelines), which means (in combination with trending on Hugo’s first birthday in February) the message is getting out there.

#MatExp is growing all the time, too – to date #MatExp tweets have had more than 152 million – yes, million! – impressions, and it was trending this week, too. It’s amazing – I am so proud to be involved. From the feedback we are getting from many sources it seems that health professionals and users alike are appreciating the value of our grassroots, JFDI (just effing do it!) campaign.

A very kind friend sent me some star-shaped buttons because she thought I would like them - greatly appreciated!

A very kind friend sent me some star-shaped buttons because she thought I would like them – greatly appreciated!

– Another year older next week

Birthdays don’t hold the same level of excited anticipation as birthdays as when I was a child. Last year’s birthday – the first after Hugo – was kind of just another day, I didn’t have the heart to celebrate. This year, I am going to try to make more of an effort for no other reason than to appreciate the fact I have lived another year, and that I appreciate the value of growing another year older.

What have you appreciated this week?

 

Mums' Days
The Reading Residence

HSJ Patient Leaders – Changing the Way Health Services Perceive Patient Experience

Yesterday I travelled to Birmingham for the announcement of the very first list of Patient Leaders by the Health Service Journal (HSJ) – I am honoured to be included in it for my work with Hugo’s Legacy and #MatExp.HSJ

It’s a secret I’ve had to keep for about a month, because the list was under embargo until last night.

That meant I had no idea who else was included on the list, which numbered just 50 individuals. Discovering who else is on the list underlined for me how much of an accolade my inclusion is.

Individuals I admire greatly for their tenacity and determination in using their own experiences to improve the care of others – such as Dr Kate Granger, Alison Cameron, Michael Seres, James Titcombe and Adam Bojelian (Adam sadly died earlier this year; I was pleased to meet his mum Zoe), to name just a few are included in the humbling list.

We are a diverse group, but we share in common the passion to use our personal experiences to campaign, raise awareness and educate to help create better services and safe care for others. We also share a vision for patient experience to be meaningful, given genuine credibility, never to be a tokenistic exercise to ‘tick a box’.

As Giles Wilmore, NHS England director for patient and public voice and information points out in his introduction, the NHS hasn’t always been good at understanding the experience of care from patients’ perspectives. However, as the publication of the list shows the NHS is learning to embrace patient experience, and the value that involving those with lived experience can contribute to improving patient care.

The list is so important, as HSJ editor Alistair McLellan said as part of his opening speech because:

and…

Last night’s event had a inclusive, positive atmosphere with a sense of mutual respect. I enjoyed catching up not only with friends, but also meeting people in real life whom to date I’d chatted to online. Thank you, HSJ and NHS England.

Me at the event, holding a copy of the supplement.

Me at the event, holding a copy of the supplement.

Hugo’s Legacy began about a month after his death, with the publication of my HELLP Raise Awareness post. While I thought I knew so much about pregnancy, I had never heard of this rare pregnancy complication that nearly killed me, and that took the life of my much-wanted baby. Nothing could be done to change what had happened to me and to Hugo, and I wanted to make sure other women were aware of the signs and symptoms of this little-known condition. Women and babies can and do die from it, meaning awareness is vital.

The main focus of Hugo’s Legacy is communication: while clinically the care we both received was exemplary, there were several incidences where additional distress could have been avoided.

Me and Hugo

Me and Hugo

St George’s Hospital, which is where Hugo was born and spent his life has been wonderfully receptive to my feedback. They invited me to the neonatal unit’s bereavement meeting to share my ideas for improving how staff engage with parents who have lost a baby. As a result, they have changed how post-bereavement counselling is offered, and are printing the simplified information I designed for them. I hope the information provides some small comfort for parents leaving hospital without their baby.

The unit knows that despite their best efforts, sadly not every baby will be able to go home with their proud and grateful parents. They are determined to get it right for we bereaved parents. This is incredibly heartening in the context of baby loss remaining.

Since Hugo died, I have given talks at various study days to educate health professionals about HELLP syndrome, birth trauma, parenting a premature baby, and life after the death of a baby.

Working in hospital communications, my experiences as a parent and patient from the other side of the fence were fascinating. I feel privileged to be able to add my professional skills to my personal experiences to help make a difference to other families by making stressful, heartbreaking situations even a tiny bit easier.

Sadly, not all follow the excellent example set by St George’s and other hospitals and organisations with whom I have worked.

Various interactions with individuals and charities have upset me because of the suggestion that there should be a time limit before bereaved parents or those who have experienced birth trauma get involved with projects related to their experience. Their reason is to make sure the parent is ‘ready’, and because it is ‘almost impossible’ to have a balanced discussion about it.

As I have written in other posts, such an attitude is patronising and insulting. It is also discriminatory to confer an arbitrary policy against a group of people.

Any organisation – whether NHS or a charity – needs to remember that everyone is an individual. They need to remember that yes, reliving traumatic experiences when telling one’s story is draining and upsetting, but it can never as be as bad as when it was experienced for real. They need to bear in mind that for some, making a positive contribution helps them move forward (not move on, a crucial distinction) with their lives.

Rather than apply arbitrary policies, organisations and charities need to apply the concept of reasonable adjustments to ensure the needs (whether emotional or physical, or both) of those willing to help are met to enable further engagement.

A few months ago I was asked who is my favourite radical from the past century, and why. Rosa Parks – the woman who defied the segregation of the US Deep South and refused to give up her seat on the bus for a white man. She knew what was right and acted accordingly.

While Hugo’s Legacy has been motivated by my sense of survivor’s guilt, a sense of what is right also spurs me on.

Women such as me constantly experience discrimination. The discrimination is not comparable to the inequalities of segregation, but it shares similarities in that a group of people are excluded because of outdated, irrational, and inaccurate beliefs, decisions, and policies.

I want to make sure our experiences are viewed as valid, our voices heard, our views respected, our babies’ memories remembered.

I hope HSJ Patient Leaders helps achieve this vision. I hope it helps increase awareness of Hugo’s Legacy and of #MatExp still further, for the benefit of families.

I also hope my inclusion in the list demonstrates to others that individuals can make a difference. As an extension of that, I hope the list helps embed patient experience in NHS organisations across the country. By collaborating and respecting the contributions patients have to make we can make a real difference, as the wonderful and very wise Kath Evans wrote in a tweet, quoting Neil Churchill:

 

Life After…Birth Trauma

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

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

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

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

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

Almost everything else is up for discussion.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

#MatExp Flaming June – The Fire Burns On!

June was a month of action for the #MatExp campaign. It was well-named, being so busy I think I could see smoke!

The month got off to a flying start with the launch of the website, the Facebook page, people sharing their action selfies – and so much more!

Women have fed back that:

  • They want to be treated as an individual
  • They find terms like ‘low risk’ and ‘high risk’ unhelpful for a range of reasons, including that life is rarely black-and-white, and managing expectations.
  • They understand the evidence behind advice and practice, and do not want to be preached to. They want to be engaged in conversation as an equal, listened to with compassion and empathy, and helped to understand in a way that is useful to them where necessary.
  • Language is so very important – the words that are used are crucial, as is the intonation and the order you put words in a sentence (eg open questions – “Would you like…” “May I…” rather than “You must…” “I am going to do this to you…”).
  • Better efforts are required to meet the needs mums whose babies are being cared for in neonatal units – while the mum is in the postnatal ward, and after discharge to make sure she does not miss out on the usual postnatal checks, as this can often fall between the cracks.
  • Parents who have experienced the death of a baby need better access to support – too many parents are currently left to find their own support, or have to do without. This is unacceptable.
  • There is a lack of support after birth trauma. Mums have said they’ve been told to ‘get over it’, their experiences invalidated. This is also unacceptable.
  • More consideration needs to be given to birthing environments. For example, midwife-led centres seem so lovely, with attractive furnishings – and they seem especially lovely in comparison to many hospital labour wards. It can seem like giving birth in hospital (often the only option for ‘high risk’ women) is a punishment for things outside our control! Would it be possible to make hospital labour wards a bit homelier to reduce the disparity? It could help reduce some of the polarisation of opinion about where is the best or safest place to give birth (the best or safest place to give birth is the place that is appropriate for the woman and/or baby’s individual needs, whether than is in hospital, an MLU or at home).

#MatExp is growing from strength to strength. I haven’t had a proper ‘day off’ in ages (there is always something to tweet, something that makes me think “ooh that would be good for #HugosLegacy or #MatExp) – but I am so very proud of being involved in this change platform.

bazaar-helen-bevan

Gill (@WhoseShoes) has written in more detail about change platforms on her blog. I’ve borrowed this image from Gill’s post because I love the analogy. #MatExp really is like a bazaar – full of all sorts of people doing all sorts of things at once; slightly chaotic, full of ideas, activity, buzz, noise – ENERGY!

#MatExp definitely isn’t a cathedral – we don’t follow one particular leader, we don’t follow particular processes, we don’t follow a particular structure – and we don’t talk in a respectful hush.

Please do get involved! It is everyone’s business. Getting involved in #MatExp is like a no obligation quotation. We understand that life ebbs and flows, the time you have or are able to commit will fluctuate. There might not be anything that piques your interest now, but who knows what might happen next month, or in six months’ time (we certainly don’t – we’re making it up as we go along!).

We encourage people to find a way to engage that is relevant to you, where you are in life, the time you have on your hands.

For example, my lovely friend Jennie started a Charity Chat series on her blog, and information on recommended books for children dealing with grief. So much support is out there but it can be difficult to find. This will provide an invaluable resource for other parents and families.

Do also have a read of Flo’s post with ideas about how you can get involved.

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How was FlamingJune for me? Thank you for asking. It was…busy! Very busy. My other half became unwell, which coincided with my return to work after a 15 month absence.

As well as that, I managed to squeeze in:

  • Co-hosting a #PNDHour chat about baby loss,
  • Talking about my #MatExp journey at an SCN event,
  • My action post – #saytheirname appeared in the Huffington Post,
  • My post about what I wanted the National Maternity Review to know was Mumsnet’s Blog of the Day.
  • Talking (with lovely Susanne) about MatExp at the BritMums Live conference and being deluged with interest!
  • Maintaining my own blog,
  •  A wonderful week’s holiday in France (and it’s little wonder I needed to sleep so much during the holiday!).

So that’s Flaming June, in a nutshell. Has our fire burned out? Goodness, no!

What women (and men!) have told us spurs us on, our fire burns forever brighter.

For my part, I am going to continue encouraging people to #saytheirname; to talk about Hugo’s story, and the learning from that; to help reduce the taboo surrounding baby loss; to talk about #MatExp to anyone who will listen.

There are also some exciting ideas in the pipeline. My personal favourite is the possibility of colouring books – to help relieve stress and anxiety, as well as a way of conveying vital messages about pregnancy and related issues to women.

With passion and determination we can together make a difference to the experience of women and babies in maternity services across the country – and to the experience of staff who care for them.

You Baby Me Mummy