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, the #MatExp team would like to hear from you.
You can help services understand what they are doing well and where they can improve for the benefit of other families.
We’re also looking for experiences from multi-disciplinary staff involved in caring for these patients and their families. What good practice do you see? What dilemmas do you face?
It’s part of a project called ‘Nobody’s Patient’, which is related to the #MatExp grassroots maternity experience campaign.
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 we are hoping to change through this project.
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 firstname.lastname@example.org by Friday May 27 2016.
I am proud to be co-developing Nobody’s Patient with #FabObs Flo, Whose Shoes Gill, and Research Midwife Sam. My own experiences – namely difficulties in adult intensive care, and communication issues between the postnatal ward and NNU are the inspiration for the project. Hugo was born at 24+4 because I had severe preeclampsia and HELLP syndrome. Sadly, Hugo died when he was 35 days old. Some of the issues are detailed in this post, What I Want the National Maternity Review Team To Know.
The project is one of three that received funding as part of NHS England’s #MatExp Challenge Fund which was formed in response to the National Maternity Review report as a method of implementing innovative patient experience improvements from groups of maternity service users who are seldom heard.
For further information – about Nobody’s Patient, or MatExp in general please visit matexp.org.uk.