The New Educators

At the end of October I travelled to central London to give a talk at a Royal Society of Medicine event about Hugo’s Legacy.

The conference – Patients and Families as the New Educators – was organised in collaboration with the Royal College of Paediatrics and Child Health.

In attendance were a variety of health professionals including nurses, junior doctors, registrars, consultants, all engaged and willing to learn from the speakers.

The early part of the day featured young people living with a variety of conditions talking about their experiences. They were all incredible speakers, and the work they are doing to help others is extraordinary.

My talk was part of a trio of bereaved mothers – with Joanne Hughes and Chantelle Hazelden – talking about our children and everything that we have been doing to make a difference in their memories.

I was also pleased to meet Zoe, the lovely mum of the incredible Adam Bojelian (who you may know as @AdsthePoet), who sadly died earlier this year.

Our experiences are diverse, but we share in common a passion to ensure our children live on through our work educating health professionals to help make sure no other bereaved parent suffers the same avoidable trauma.

The wonderful Kath Evans, Head of Patient Experience at NHS England chaired our session. She opened by asking delegates to each think of one thing they will do as the result of our talks.

L-R: Chezelle; Zoe (Ads the Poet's wonderful mum; Jo; Kath, me.

L-R: Chezelle; Zoe (Ads the Poet’s wonderful mum; Jo; Kath, me.

 

I was first: the tweets delegates posted during my talk tells the story.

These are the slides from my presentation that set the context for the comments in the tweets:

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It shows how much this special little guy continues to make a difference to the world.

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As I said in the presentation, while the 35 days we had with Hugo will never be enough, we know he defied the odds to live that long. He was a feisty little boy, so I asked people to think if Hugo could achieve all he has with everything stacked against him, what could they do if they put their minds to it?

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After my talk, Joanne Hughes spoke about her beautiful little girl Jasmine, who died when she was 20 months old.

Jasmine had developed an illness called Acute Disseminated Encephalomyelitis, ‘ADEM’, It is a rare reaction to a common virus that caused inflammation within Jasmine’s brain. This is usually investigated as a matter of urgency, treated promptly and safely with steroids by experienced teams if the child is continuing to get worse, and thankfully, the mortality rate for this illness is extremely low. Sadly, as Jo writes on the site Mother’s Instinct, that she set up in her daughter’s memory Jasmine received neither urgent investigation, prompt treatment, or safe treatment by an experienced team and her concerns as a mother were not listened to.

To compound her grief, since Jasmine’s death the family discovered multiple errors in her care, and a fight with the hospitals concerned to find answers about what happened, and to prevent another family enduring the same trauma. Jo’s mantra is ‘turning wounds in to wisdom’ as she writes in her blog about the event.

Chezelle Hazelden talked about her gorgeous baby boy Tayden, who developed an infection with Herpes Simplex Virus (the cold sore virus) after he was born. Sadly, it wasn’t picked up in time despite Chezelle constantly telling the professionals she thought something was very wrong, even pointing out things that later were discovered to have been vital clues. She has created a poster campaign to raise awareness for professionals to think about the diagnosis of HSV in children like Tayden, and to make the public aware of the dangers of the cold sore virus for babies.

The courage of these two mothers is truly humbling. Losing a child is bad enough – but to know it is likely their death needn’t have happened, that if things had been done differently their child would still be with them, growing up – I honestly don’t have the words.

On top of that, to be treated so disrespectfully by the hospitals who failed their children? Abhorrent.

I was bowled over, completely overwhelmed by the positive reaction to my – and Joanne’s and Chezelle’s talks. You could hear a pin drop, and there was not a dry eye.

After our session, lots of hugs were given to the three of us by tearful delegates. It was clear how much our presentations had affected everyone.

Most importantly,  – and Jasmine and Tayden – are living on through their legacies.

The feedback we received is heartening:

All were fantastic speakers and I really appreciated their honesty in sharing their experiences.

Very moving, communication is essential

Very powerful and helpful to hear their story and very brave to tell their story
very powerful presentations.

Strong relevant stories. The silence in the room said it all!

I am so humbled, moved and inspired by this incredibly courageous and determined group of women. Thank you so much.

Amazing, humbling, moving.

Beautiful to hear first-hand experience.

Extremely powerful and emotionally charged, made me think of my own experience
Thank you for all these speakers, so so useful.

I particularly like the 11 key lessons learned by Ben Holden in the image below. You can also read Ben’s blog in full.

 

The tweet below sums up what we three mothers were saying – it can be easy for health services to stick their heads in the sand, but sitting listening to uncomfortable experiences – and acknowledging where things have gone wrong, meaning doing so takes courage.

But to those health professionals who do find the courage: thank you. It really is a gift, and as Joanne says can help heal.

As a final word, I would like to share with you a reminder that even when you think nothing can be done for whatever reason – there is always something that can be done.

And these simple things can make the world of difference.

No money

1 Comment on The New Educators

  1. Louise Parry
    November 19, 2015 at 10:18 pm (1 year ago)

    You make such an impact on everyone you meet Leigh and the legacy you are creating for Hugo is amazing. Make sure you still make time to be kind to yourself and try not to work yourself too hard. You are Hugo’s wonderful mummy but you are also still you.
    Louise Parry recently posted…To Jeremy Hunt, On Behalf of My HusbandMy Profile

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