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.
So excited about our breakfast session tomorrow – we're sharing with you all we know about creating social movements #quality2017 > pic.twitter.com/zVwDk5wokO
— #hellomynameisLeigh (@leighakendall) April 27, 2017
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.
What fires me up for change: using my skills, personal experience, passion to influence positive change. #HugosLegacy #MatExp #Quality2017 pic.twitter.com/9bHLdNf1re
— #hellomynameisLeigh (@leighakendall) April 25, 2017
I created handouts with key points about creating a social movement:
We're nearly ready for our breakfast session! #Quality2017 @DomCushnan @KateSlater2 @KathrynPerera @helenbevan @BrianwDolan pic.twitter.com/jfYN6yT0cZ
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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…).
Active discussion about old power vs new power. Great energy in the room! @horizonsnhs #Quality2017 @leighakendall @KathrynPerera @karas01 pic.twitter.com/hA5kwHo9I7
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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.
Why I care… creating with heart and head @leighakendall talking #HugosLegacy a social movement for change #Quality2017 @horizonsnhs pic.twitter.com/7cIv8Dx0Br
— β¨ Tony β¨ (@AnthonyLongbone) April 28, 2017
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!
People in informal networks have TWICE AS MUCH POWER to influence change says @helenbevan – incredible! #Quality2017 #matexp #HugosLegacy pic.twitter.com/ov1bpQZbi5
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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.
Small changes make a huge difference in maternity services in Nigeria – as anywhere #Quality2017 #matexp pic.twitter.com/ud5e5DYXQJ
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Boosting stocks of donated blood in Nigeria: encouraging fathers to donate blood at antenatal booking appointment #Quality2017 #matexp pic.twitter.com/LjglFOI5b5
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Zel talking about families in Nigeria needing money to fund adequate maternity care,makes me appreciate NHS even more #Quality2017 #matexp pic.twitter.com/DieYcQ2Pdr
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Back to the UK – Gill talked about #MatExp
Now Gill is talking about coproduction in maternity services in U.K. #coproduction #matexp #Quality2017 pic.twitter.com/n3qey15b37
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Can you tell who is the consultant obstetrician? Bereaved mum? Baroness? #matexp removes hierarchies #Quality2017 @WhoseShoes pic.twitter.com/k9OE69kskA
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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.
The power of real stories, @leighakendall sharing #HugosLegacy emotional is not the word – need to remember the person #Quality2017 pic.twitter.com/BXQltbeHA3
— β¨ Tony β¨ (@AnthonyLongbone) April 28, 2017
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.
A privilege to be part of the presentation with @001Zel from Nigeria & @WhoseShoes at #Quality2017 #MatExp #HugosLegacy @FWmaternitykhft pic.twitter.com/mjjpKTaDn2
— #hellomynameisLeigh (@leighakendall) April 29, 2017
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.
So wonderful to see you @WhoseShoes ! What a fab session, so proud to represent #MatExp in front of π audience #HugosLegacy #quality2017 π pic.twitter.com/ogLvM18I52
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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:
Structure vs agency, rules vs freedom, old power vs new power…the changing world of change #Quality2017 @helenbevan pic.twitter.com/WUgkHbbzs1
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Still see too much tokenism in #ptexp – this must change, need to see value for positive change and improving quality #quality2017 pic.twitter.com/YbN8MP2hrw
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Disruptive co-creation is the way forward – collective agency of people across the board #Quality2017 #influence #power #ptexp #matexp pic.twitter.com/9YDBmpDM5g
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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.
"Thinking differently requires courage." Spot on @leighakendall at #IHI #Quality2017 pic.twitter.com/L2GYaGt9zI
— Kathryn Perera (@KathrynPerera) April 28, 2017
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:
Welcome @Cmdr_Hadfield – the sky is not the limit #Quality2017 pic.twitter.com/zIjXhQVr2P
— Dom Cushnan π€ (@DomCushnan) April 28, 2017
I liked these key messages:
Try new stuff, make mistakes, learn, adapt…challenge the impossible, make it possible #Quality2017 pic.twitter.com/bPp7PVxlgr
— #hellomynameisLeigh (@leighakendall) April 28, 2017
Need to recognise things are going to go wrong…need to figure out how to deal with failure. Competence & preparedness #Quality2017 pic.twitter.com/AqHT2sjw3h
— #hellomynameisLeigh (@leighakendall) April 28, 2017
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.