21/10/15 Turning Wounds into Wisdom

Yesterday, I stood up and spoke to a room full of Paediatricians at all stages of their career, Parents, Young People, and a host of other professionals working to improve the Healthcare Experience for all Children and Young People.

The conference was called Patients and Families as the New Educators, and was held in the Guy Whittle Auditorium at The Royal Society of Medicine Building on Wimple Street in London.

Wow, what a day!! This was by far one of the most stimulating, exciting, positive, conferences I have attended! I took something away from each and every talk.

I stepped onto the stage with Hugo's Mummy, Leigh Kendall ( www.headspace-perspective.com, www.brightmindspirit.org ) and Tayden's Mummy Chezelle Craig.

Leigh was up first.

Whoa! Leigh gave an emotional and brilliant talk, telling us all about her little 'Hugo Boss' , how his feisty little personality shone through in the Neonatal Unit where he spent his 35 days of life. How his clinical care was exemplary, but how through unbelievable communication blunders staff had caused Leigh and Martin, Hugo's Daddy distress that could have been avoided. There were lots of examples but two really hit me - 1) It took far too long for Leigh to be taken to be with Hugo - Hugo needed his Mummy, and his Mummy needed him, and 2) When the worst possible news was delivered, it was delivered in a manner akin to a Jury deciding Hugo's fate, to only Leigh (nobody waited for Martin and Leigh to be together) and when she fell to the floor sobbing the doctors just stared. Leigh, a communications professional, gave the delegates lots to think about what they say, how they say it, and when and where they say it. It was an incredibly moving and extremely powerful talk and the messages were loud and clear.

Then it was my turn. You can imagine after hearing Hugo and Leigh's story the state I was in. Inspired, deeply deeply moved and very emotional. I stood up to speak and had a bit of a wobble, but after a quick blow of the nose and a deep breath...I was off..

I told the delegates only part of what happened to Jasmine, telling them of my fears and concerns, how I knew something was wrong, but my concerns weren't acted upon. I told them about the observations that were not done and should have been to make all the difference to Jasmine. I could see looking out at the audience that people were moved my my story, and taking all in. There was lots of eye dabbing, nodding and note taking. I got their commitment to go back to work and get the basics right when looking after children, making sure they always do ALL of the basic obs, including blood pressure, and follow up on results outside the normal range. I also told them they must have the Courage and the Kindness to tell families the whole truth when things go wrong, and that this truth has to include both the known facts and their opinions to be meaningful.

After me it was Chezelle's turn. In another deeply moving and inspiring talk, she told us all about Tayden, her little boy who developed an infection with Herpes Simplex Virus (the cold sore virus) after he was born that 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. Two things struck me, "Tayden didn't cry very much" Chezelle didn't think herself lucky, she knew something wasn't right. 2) He didn't get upset when the cannula was inserted. Chezelle worried this meant there might be something wrong with his brain function... She was reassured, but she had been right. Chezelle told the delegates they must listen to Mothers Instincts. 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.

We certainly got our messages across. It was tea break after our talks, and we were surrounded by delegates all thanking us for speaking, telling us how moved they were to hear us, and how they will do things differently as a result of what we said. Contact details were swapped, and we received invitations to go and speak at or work with many organisations. It was so encouraging for us to get such amazing feedback and to know we have made a difference for future families.

We were three bereaved Mums, all with a burning desire to turn our wounds into wisdom and create a legacy for our children. We proved yesterday, once again, how much the NHS gains from embracing bereaved parents and using their insight, their opinions, and their passion to inform improvements in paediatric care, both in terms of safety and experience.

One tweet I received said "Forget one thing, I wrote down a whole page of things I'll do differently as a result of hearing you speak"

Myself, Leigh and Chezelle did our kids proud yesterday.

It won't stop there. I know delegates will look at the Mothers Instinct website after yesterday, read all of the patient stories we have shared so far, be deeply moved by each of them, and learn from them too.

Turning wounds into wisdom.

Joanne Hughes
Mothers Instinct