Was your baby in neonatal care? Are you a mother who needed special care herself, in adult high dependency or intensive care as the result of your pregnancy or your baby’s birth? Or, did your baby sadly die before, during or after birth?
If you would like to share one thing you would like health care professionals to learn, or change, as the result of your experiences, Leigh and the project team would like to hear from you.
The focus of ‘Nobody’s Patient’ is:
- Women who are made critically ill by pregnancy or birth or who are ill during pregnancy (eg with cancer)
- Parents of babies cared for in a neonatal unit (whether born prematurely, or a term but sick)
- Parents of babies die before, during, or after birth (including late miscarriage).
There is currently a gap in provision for these women and their families in terms of the care services provide, creating issues with clinical effectiveness, safety, and quality of care.
These families are also limited in the opportunities offered to feedback their experiences, sometimes even being excluded from more traditional methods of feedback such as surveys which often adds additional stress and upset to what is already an emotionally challenging time.
It is therefore difficult for services to understand what they are doing well and where improvements can be made in caring for these families.
That’s what the team are hoping to change through this project.
Share your experience
The scenarios need to fit on a small card, so no more than a couple of paragraphs please, wherever possible focusing on a particular event that happened and how it made you feel (you can send several scenarios if you like).
A scenario could be something like:
“When I was in intensive care after my baby was born – I was recovering from HELLP syndrome and needed an emergency Caesarean under general anaesthetic when I was just 24 weeks’ pregnant – I felt very alone, scared, and vulnerable. No one would take me to see my baby, who was very poorly in the neonatal unit. No one understood, and it felt like nobody cared.”
Please send your scenarios – with Nobody’s Patient Scenarios in the subject line – to [email protected] by Friday June 17 2016.
You can read more about the project over on Leigh's blog, Headspace Perspective.