Brief profile : e.g. who you are, what you do
I’m an empty-armed mother of a baby boy, Hugo, who was born in 2014 16 weeks prematurely because I had preeclampsia and HELLP syndrome. Being an NHS communications professional, my time as a patient and as a parent in hospital was fascinating. There were many incidences where further upset and stress could have been avoided if there was better information and communication. So, I’ve set up Bright in Mind and Spirit – Hugo’s Legacy – to help raise healthcare professionals’ awareness of the importance and impact of effective communication. I also blog at Headspace Perspective about my experiences of birth trauma, having a premature baby, baby loss and grief. You can find tweets marked #HugosLegacy. I am also helping lead the #MatExp campaign, which aims to identify and share best practice among the nation’s maternity services.
What has been your most notable radical accomplishment or experience?
I am astonished at the reach of Hugo’s Legacy. Through Hugo’s Legacy (my blog, on Twitter, and talks I have given), I have challenged healthcare professionals to consider the way they communicate with patients – especially with respect to new parents whose baby is being cared for in a neonatal unit, and with parents whose baby sadly dies.When Hugo was born, we were given a stash of beautifully-produced leaflets and booklets about premature babies. They were too detailed, and too much, and remained unread. That was a shame, as it meant my partner and I missed vital information. I designed a poster for the neonatal unit at St George’s, where Hugo was cared for. It contains the main points parents will need to know, and some simple points of advice. The poster is in the form of a jigsaw, with the baby at the centre, to signify each of the points is important and they all form part of the overall picture. It is now on display in the parents’ room, where tired mums and dads spend lots of time – bite-size chunks of information are best at this time.When Hugo died, we were given a similarly large stash of leaflets that also remained unread. The newly-bereaved are just unable to take in anything longer than a sentence or two at a time. I felt so lost, and spent time searching for advice and support on the internet. I designed a simple card, small enough to slip in to a purse or wallet. It contains some simple points about how parents are likely to feel, advice on things to say and do, and web addresses/phone numbers of useful organisations who can provide support. St George’s is now producing these.
I am very proud of these initiatives, and would like to support them being rolled out to other units to help other parents during these very difficult times.
When did you first realise that you are a health & care radical?
Being a communications professional, I am passionate about language – appropriate vocabulary, tone, and content. I get frustrated at the slow pace of change and the sense of ‘this is how we have always done it…’ – that doesn’t mean it’s right!
What advice do you wish someone had given you earlier in your career?
That passion and creativity are wonderful tools, don’t be afraid to speak up.
What is your favourite radical characteristic?
Always questioning and challenging the status quo.
What is your favourite question?
“Have you considered the impact of that [form of communication] on the user? Will it be useful to them, will they read it, understand it, will it improve their understanding?”
What one clue tells you you’re affecting positive change?
When a healthcare professional gets in touch to say that Hugo’s story has made them think of better ways to help a new mum with a baby in a neonatal unit, or that his legacy has made them reconsider their language. It fills my heart with pride.
What do you think it’s most important for people to understand about radicals?
We are full of passion, creativity and ideas. We think and see things differently. We want to work to help make things better for others. You don’t always have to understand us, but embrace who we are. Don’t try to make us conform.
What’s your one word piece of advice for radicals?
What’s your one word piece of advice for non-radicals?
Where do you think radicals are most needed today?
Everywhere! Every environment needs someone who thinks differently, who is willing to question and challenge to make sure patients are receiving the best-possible care and experience, staff are happy, and that services are of the best-possible standard.
Who is your favourite radical from the past 100 years?
Rosa Parks – the woman who defied segregation and refused to give up her seat on the bus for a white man. She knew what was right and acted accordingly.
What’s the one thing you should never say to a radical?
How do you rate yourself as a radical:
Bursting with ideas, creativity, and the desire to make a difference for other parents and babies in Hugo’s memory.