The Sky Is Not The Limit: Progress, Influence, and Courage at #Quality2017

Last Friday showed me just how much progress I have made during the past year: that the sky is not the limit.

A year ago I had been signed off work because of undergoing EMDR therapy for PTSD. I was going through such a tough time I thought I would surely be carried off and sectioned. The symptoms were, I thought, in addition to failing to keep my baby alive further evidence that I was terrible human being. At that time, I could not see how I could possibly get my life back on track again – it all felt way too much.

One year later, I was presenting on an international stage at the IHI Quality and Safety in Healthcare conference. Not just once, but three times in one day.

Session 1: How to Shape a Social Movement – in an hour!

The day started bright and early, arriving at the venue by 6.40am to set up for the Horizons team 8am breakfast session.

~PRESENTATION~ Off to #quality2017 to prep for our breakfast session – then speaking at two further sessions with my patient hat on about – #HugosLegacy #MatExp – very proud, great opportunities to talk in front of an international audience!

A post shared by L E I G H ~ πŸ‘—πŸ’„πŸ’…πŸ’ͺπŸ€·πŸ»β€β™€οΈπŸŒΈπŸŒˆπŸ’– (@leighakendall) on

Being mindful of people unable to attend the session, we invited anyone interested to share with us what fired them up for change, so they could be involved if from a distance.

My selfie made reference of course to my own social movements: #HugosLegacy, and #MatExp.

I created handouts with key points about creating a social movement:

We were delighted to see a full room – especially for such an early start on day 3 of a conference with a full programme (not to mention the abundance of free-flowing wine at conference events the night before…).

I felt very proud to be an active part of the presentation by speaking on stage about some of the most crucial parts of a social movement: the power of informal networks, finding your people, building communities, and forming your narrative – your story of self that you tell in a way that compels people to empathise, and inspire others to gather together to take action.

Adding observations from my own experiences with #Hugo’s Legacy, and #MatExp demonstrated that what we were talking about is not just theory, but actively happening in the real world by regular people making a real difference.

I love this stat: people in informal networks have twice as much power to influence change than those within a formal hierarchy. The #MatExp social movement has certainly proved this is true!

Session 2: Improving Maternity Care Through Engaging Communities

Next for me was a session led by my dear friend Gill Phillips (@WhoseShoes), and Zeluwa Maikori from Nigeria.

Zel’s talk about improving maternity services in Nigeria was insightful. For me it underlined how most crucial resources for making change happen are passion and determination.

Back to the UK – Gill talked about #MatExp

I was a ‘surprise’ speaker, and had been sat in the audience until it was time to come to the front to talk about Hugo’s Legacy.

To emphasise Gill’s point about us all being people – humans – and that #MatExp is about people with a shared passion without hierarchies I started my talk by introducing myself as the Communications and Social Media Manager at NHS Horizons – some people would have seen me at the Horizons’ at the breakfast session earlier that morning. I then pointed out I am also one of the women in the photo above, kneeling at the front – I am a bereaved mother.

I told Hugo’s story, starting on that fateful day in February 2014 when at 24 weeks’ pregnant I attended my routine midwife appointment and was sent straight to hospital, diagnosed with HELLP syndrome, and told that both me and my unborn baby were close to death. Of the turmoil being in intensive care, unable to see my critically ill baby son and feeling so frightened, vulnerable, and alone. About how after Hugo died I wanted to use my personal experiences, and my professional NHS communications experience to make a difference for other families and how that has come to fruition through Hugo’s Legacy, MatExp, and Nobody’s Patient.

At the end of the presentation Gill, Zel and I were approached by people from all across the world. I was bowled over by the obstretricians from Denmark who already follow me on Twitter, and know about Hugo’s story; they told me how much they had learnt. Neonatal people from Scotland sought my advice how they can encourage patients to be involved with their work. An Australian midwife told me, through tears, how much I had moved her. I have been invited to be involved with the Maternity and Neonatal QI Collaborative bereavement work, as an NHS professional, and using personal experience.

The influence that me and my tiny boy are having on the care and experience of other families is extraordinary. When I started Hugo’s Legacy I wasn’t thinking explicitly of setting up a social movement, and I wasn’t consciously following the principles – telling my story, compelling people to take action, and building communities were actions I tool intuitively.

My comms and engagement background and experience were invaluable of course, but the point is that anyone with passion and determination can build a social movement, and can make a difference.

Our maternity services presentation was on at the same time as a session by Sir Ranulph Fiennes – a good draw! We were delighted to see such a great turnout to our session considering the competition.

You might also be interested to see Gill’s and Tony’s Steller stories for more perspectives on these sessions.

Presentation number 3! Where social movements meet co-design: participation in healthcare improvement.

Helen Bevan had asked me to be on a panel (wearing my ‘patient hat’ with Tony Longbone and Christina Krause). At the end, we would reflect on the presentation by thinking of one word that summed it up for us.

Some of the key slides:

Interestingly, all three of we panellists chose a word beginning with ‘C’: Christina chose connectivity, Tony chose confidence, while my word was courage.

‘Courage’ exemplified the presentation for me because patient leaders need courage to share personal stories, and to find a way in to a hierarchy that often at best involves patients as a token gesture, and at worst demonises the patients. Courage is also needed by those within the hierarchy to think differently, and to encourage the doubters to actively involve patients, to help them to see the valuable positive contribution that we can make.

Thanks to Hazel for recording this video of why I chose courage:

I was also invited to describe the power of the disruptive cocreation of #MatExp, which blends old power and new power to such incredible effect.

The sky is NOT the limit:

Commander Chris Hadfield closed the event with an inspiring session.

The plenary breathtaking videos and pictures from the International Space Station that help put things in perspective:

I liked these key messages:

These quotes sum up the day for me. This time last year I found it impossible to see how I could move forward, to build life for myself in the ‘new normal’ – it seemed insurmountable, just like how walking on the moon seemed just half a century ago.

But we CAN challenge the impossible, make things possible. A cheesy cliche, yes, but none of us knows what is around the corner – we need to do what we can to be prepared for things to go wrong. I am not wishing personal tragedies on anyone of course – it is about reflecting that life does not always go to plan. We need to build our personal resilience, live with life in perspective. Live with passion, determination, doing things that matter. Feeling the fear, and doing it anyway.

For me, that is through creating, influencing, making changes.

The sky is definitely NOT the limit.

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