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).


This next stat is VERY exciting:

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


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!


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…


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:



IMG_20150713_114526 (1)

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

Could ‘Before Sunrise’ Happen in 2015?

Before Sunrise was released in 1995. That was 20 years ago! It beggars belief. I watched it again at the weekend, and was struck by the thought of what such a film would be like in 2015 – and whether such a scenario could even be possible?

If you haven’t seen it, Before Sunrise begins on a train travelling through Austria. American tourist Jesse (Ethan Hawke) gets chatting to French student Celine (Julie Delpy). They feel a connection and Celine agrees to join Jesse when he has to get off the train in Vienna, rather than continue on her journey to Paris.

Jesse and Celine spend time wandering around Vienna talking about life, the universe and everything until early the next morning, when Jesse has to leave for the airport to take his flight home. Celine boards a train to Paris. They agree to meet at same train platform exactly six months later, but don’t exchange phone numbers or addresses, preferring to leave things to fate instead.

When I first saw Before Sunrise I was 18, and at university. Basic internet and email. No social media. No mobile phones. Almost a world away from today.

It got me thinking: would Jesse and Celine even have struck up a conversation with each other on that train? In the film, they are each reading a book (made of paper!). Today, on a long train journey you are possibly more likely to be watching a film or playing a game on your tablet; listening to music; typing away on a laptop. You might still be reading a book, but it may be a Kindle rather than one with real pages.

Today, we are often far too engrossed in our online lives, especially on public transport to notice other people. In fact, often it helps us avoid having to interact with our fellow travellers.

On arrival in Vienna, Jesse and Celine wondered what to see, and ask a random couple of guys on a bridge. In 2015, say they had struck up a conversation on the train. They would have missed the bizarre conversation about the strange play the guys were in (possibly not a bad thing) because they could have found a free wifi zone to check online tourist sites, or asked Twitter for people’s recommendations.

Jesse and Celine spend the hours wandering the city talking about all sorts. They barely stop talking – except for their moments of passion, that is.

In 2015, many of us can’t stop ourselves checking texts, emails, Facebook, Twitter, Instagram and WhatsApp notifications. What would that have done to the flow of conversation? It seems these days it is difficult to have a conversation for that long without a quick check of our phones.

Do you remember the scene in the bar when Celine and Jesse pretend to call their friends to tell them about the wonderful person they had just met? I wonder whether today, they wouldn’t indulge in such make-believe, instead messaging their friends or posting a status to let them know about the crazy thing they had done in venturing around Vienna with a complete stranger.

They would have probably been taking Instagram pictures of their journey around the city, loads of selfies.

About half way through the film, Jesse makes a comment about technology saving time, but what do we do with that time? His example is a word processor like it was a fabulous thing (which to be fair it was in its time!) It prompted a mirthful laugh. I remember my old word processor from university – great clunking machine with a small green screen that showed only five lines at a time, and an integrated printer that sounded like a machine gun.

Jesse made a good point! Technology can save us time. It can connect us, enable us to collaborate and make friends with people we might otherwise never have met. Technology provides excellent opportunities for procrastination – but we’ll find a way to avoid doing something with or without social media.

We can’t deny our addiction to social media, though – and while it can save a lot of time if we’re not careful it can sap it, too (how many evenings have been spent ‘just quickly checking’ Twitter, and several hours later…)

No spoilers, but social media could have given Celine and Jesse a happier ending. They depart, having fallen in love during the past few hours, with the promise of meeting again six months later. Dear readers, that meeting doesn’t happen…

If only they had today’s technology they could have kept in touch by email, exchanged declarations of love via regular Skype calls…and probably obsessed over each other’s social media statuses. Who are they with? They’re having fun without me?!

Swings and roundabouts, then. Happy endings are never that simple.

Technology doesn’t solve everything: Before Sunrise belongs in 1995. Even if you could suspend your disbelief at getting off a train in a strange city with a complete stranger, the events of the film just would not translate to 2015.


Being a Tall Poppy, and the Heroine of My Life

“Life-threatening is the ultimate in empowering”, I have heard.

It certainly worked for me. Growing up, teachers observed my lack of self-confidence and recorded their thoughts in my school reports. The reports included words to the effect of “Leigh is bright, works hard, and produces consistently good work. I wish she would put herself forward more, come out of her shell.”

I’m now well and truly out of my shell. Empowered. Confident.

My increased self-confidence was evolutionary to an extent. It developed over time, and with life experience. Increased self-confidence has come with being comfortable with who I am, what I look like, and caring less about what other people think.

That new-found confidence received a huge boost as a result of a life-threatening illness, and Hugo’s death. “What else could hurt me?” I thought. The worst had already happened. That is not to say I am completely devoid of feelings, of course.

But I am changed so utterly, completely, and in so many ways by those events of February and March 2014.

I have been writing about those feelings in this blog, giving talks to healthcare professionals, badgering people on Twitter, become an action lead for the #MatExp campaign. Incredible things that I could not have dreamed of doing about eighteen months ago.

Sometimes I have been fuelled by anger at the unfairness of the world. But my passion has been motivated by the desire for Hugo’s all-too-short life to have been worth something. For improvements to be made in his memory.

While my confidence was better than it had been during my school days, before Hugo died I did not realise or acknowledge that my voice is valid, worth expressing, with views to be valued by others.

I realise now I am a tall poppy. I have the confidence to say that, to be that, to be proud of it.

I am vulnerable and fragile, like a flower in a meadow. Yet I am also strong, reaching out to others, collaborating, trying to teach kindness and compassion.

Working on Hugo’s Legacy. Making a difference to other families in Hugo’s memory.

A member of our #MatExp group made this beautiful image about tall poppies.


I also saw this quote yesterday, from the late, great Nora Ephron (screenwriter of classic films such as Silkwood and When Harry Met Sally).

Above all, be the heroine of your life, not the victim.

My life is fraught with challenges. Legacies of my illness, and Hugo’s death. Anxiety, flashbacks, panic attacks sometimes. A deep, dark abyss of sadness. Sadness at what cannot be unchanged, and what can never be. Missing my son so very much.

But my life includes joy, too. I want people to empathise with me, but never feel sorry for or pity me. I have suffered, I suffer still, I will continue to suffer in some way for the rest of my life.

But I am not a victim.

I am the heroine of my life.

[Better make sure I have the ‘e’ on the end of ‘heroine,’ considering the connection with poppies. But anyway…]

A couple of weeks ago I approached some brands, and they were kind enough to send me some things. My other half, Martin is a photographer and this morning he took some photos of me for the posts I need to write about them.

The look in my eyes says it all. Staring down the lens of the camera.

There is strength behind those eyes.



My voice matters, and so does yours.

You should not have to endure a life-threatening experience to feel empowered, confident, to know that life is not to be wasted, to take advantage of opportunities to fulfil your potential.

So off you go, use that voice. If you are lacking in confidence, find ways to build it up.

Make a difference to your life. Make a difference to others’ lives.

Be a tall poppy, and the hero(ine) of your own life.



The General Election, Democracy, Views, and Social Media

An old adage says that politics and religion are not topics for polite conversation – it is so true. Both topics are entrenched in passionate, divergent views.

The full results of the General Election have not yet been announced, but at the time of writing (10am ish on May 8), it seems predictions of a closely run race were wrong. There has been a lot of disappointment about the likely result on Twitter and Facebook this morning.

My own political views are left-leaning. I believe in a fair society. My personal view is that the Coalition Government did not provide that, and a Conservative government will not provide that.

I voted according to my beliefs, as is my democratic right. I haven’t expanded on them here because it would be a very long post indeed – and that’s not the point of my post.

This morning, I exclaimed my disappointment at the likely result, and on Facebook wondered whether people care about the NHS, and anyone who doesn’t have the benefit of money or privilege to support them. There are people who agree with me, and people who don’t.

The comment was a general one expressing disbelief, and concern for the next five years. It is my democratic right to do so. While I do not need to explain myself, it was as much about media bias and propaganda, a screwed up electoral system that no longer meets the needs of today’s party politics, and all the people who could not be bothered to vote as it was about people who voted a certain way.

While it was not intended as a personal comment with any implication that people who voted a certain way are bad people, voting is a personal decision and people may take comments personally. I stand by my beliefs, but the point of my ramblings this morning is to be respectful about other people’s political opinions.

We need passion, and we need people to stick their heads above parapets to make change happen. We need those people on all sides, from all parties, from all viewpoints, from all political persuasions. We need people who are not afraid to speak up, and speak out.

Today is the 70th anniversary of VE Day. Seventy years ago today, Victory in Europe was celebrated. Occupied Europe was freed from the clutches of Nazi Germany, and the UK was able to continue being a free democracy thanks to the sacrifice of countless men and women.

I have seen comments on Twitter from people who voted more towards the right say they feel reluctant or intimidated to talk about their political beliefs because of the backlash they may receive. In any context that is sad, but the fact that there are people feeling unable to express their democratic right of freedom of speech is particularly poignant today. I don’t agree with their political views, but I do agree with their right to be able to express them (with the usual caveats about not being personal, or abusive – and provided they used their democratic right to vote).

It doesn’t matter how you voted. We probably won’t agree with each other, just as we probably don’t agree on many things. There will be many passionate emotions expressed today on social media, the traditional media, in workplaces, shops – and everywhere. We should celebrate our democratic right to freedom of expression without fear of oppression.

What matters most is that you voted. And if you didn’t – shame on you.