Left confused by medical jargon after her daughter was born 13 weeks early, Shelley Marsh wants hospital staff to think more carefully about how they communicate with patients' families.
Shelley, who’s from Aldenham in Watford, says there were things she didn’t understand when her daughter was taken into neonatal care, as doctors and nurses started using medical language and acronyms.
She now wants healthcare professionals to improve the way they explain things to parents who’ve had premature babies, and is helping them to understand how overwhelming an experience it can be for families in intensive care.
‘My daughter was in intensive care for a year. I was so afraid, I couldn't speak,’ explains Shelley.
'You have the fear about what is going to happen to your child and you’re not in a place to understand everything.
‘I remember one of the nurses talking about moving her to "Scaboo" when she was stronger.
'I thought that was a cute name for the nursery.
‘It’s actually the Special Care Baby Unit (SCBU). There are all sorts of medical terms that make sense to the professionals, but not to families.
‘While they do an amazing job, I think it’s important for medics to have a better understanding of what families are going through. It will help if we can just improve communication.’
With Fixers, Shelley has helped create a short film based on her memories of her time in hospital.
It’s inspired by a diary she wrote following the birth of her daughter and details the agonising moments spent in intensive care.
Shelley narrates the piece and explains how important it is for hospital staff to communicate with parents in a way they can understand.
She also outlines the challenges of life with a child in intensive care, including living in hospital accommodation and being away from your other children.
You can watch Shelley's Fixers film at the top of this page.
‘Since our daughter’s birth, I have been motivated to find ways to help medical professionals and families to understand the complexities faced in neonatal and paediatric intensive care units.
'Our daughter is now eleven and about to start secondary school and I feel incredibly privileged.
‘If you are connected to a family in intensive care, either personally or professionally, I hope you find this film helpful.’
*NOTE: This project, supported by the Patient Experience Team at NHS England, has trialled working with Fixers over the age of 25.
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