Our Parent Advisory Group members have bravely and generously shared their experiences and ideas to help us develop a framework for driving FICare progress in neonatal units across the UK. Below are some of their stories and their reasons for supporting Bliss in this project.
Hayley
“My two sons spent time in a neonatal unit, years apart, and when witnessing the fantastic care provided to them, I knew that I wanted to turn a difficult time into a positive and use our journey to help other families experiencing the same. The FICare model is a fantastic project which I am honoured to be a part of.
“The model aims to improve patient and family experience and help strengthen relationships with staff, leading to a more holistic and personalised level of care to be delivered from birth to discharge. We often heard the phrase ‘mum knows best’ during our neonatal stay and FICare enables the ‘parent/carer knows best’ mantra to truly be delivered whenever there is an opportunity to do so.”
Savhanha
“I want to be involved with the project because as a first-time mum who had a low-risk pregnancy with no complications, I was caught completely off-guard with my son arriving prematurely and was not ready for the weeks that followed. As parents to be, you get a lot of information in terms of what to expect, what to look out for, and preparation for a baby born full-term but there's nothing there for you when you're in a situation with pre-term labour and a premature baby.
“It's rewarding to know that my experience and what I felt I needed in retrospect will help parents who will unfortunately but inevitably go through a similar experience, so they at least feel comforted and supported by their hospitals with information that, when you're going through one of the most difficult beginnings as a parent, is invaluable.”
Graeme
“I would say that I wanted to get involved because of the two different levels of care that we experienced. In the first unit we were encouraged to get involved in as much care as we felt able to do. When we were transferred, there was clearly a lack of culture of parents being involved. Other families were shocked when we talked about how involved we were in our child's care when on the first unit.
“In being involved in the group, I am trying to ensure that more families experience FICare in the way that we did in the first unit and hope that this becomes the norm for all units across the country.”
Leah
“I'm interested in being part of the project as my feelings about the experience of having a child in NICU have changed over time. Initially, I felt overwhelmingly grateful for all the medical help and of course still strongly feel that way. However, over time I could see areas where we had no expectations from public services where perhaps we could have expected more and would expect better for people living through this experience now. This project gives us a chance to feedback on those areas.”
Lynn
“Cillian was our miracle baby and the shock and anxiety when we realised he may come at 24 weeks was indescribable. He actually came at 26 weeks after a 2-week hospital stay and I was not able to see him for 3 days after his birth as I was in intensive care myself. It's hard to describe the heartache of the experience and having a charity like Bliss to support us was invaluable.
“We were lucky enough to be on an integrated FICare unit for our baby’s 3-month NICU stay and I can't describe the amount of comfort and how thankful I was to be involved in the care of my baby right from the start - nappy changes, feeds, kangaroo care - these are the things we loved doing for him.
“It's the most wonderful aim to have all parents in that difficult situation be able to be as involved in their baby's care as they want to be and for this to be the standard of care. I hope that by being involved in this project, I can give back in some limited way and hopefully help future parents in this very difficult situation.”
Ayesha
“I have experienced two very different NICU journey experiences. After my last NICU journey, which was extremely challenging, I wanted to be part of the group to share my experience and create awareness as I could not at the time. Each parent has a different experience, I wanted to be heard and influence some change in areas that needed developing and bringing more awareness due to the lack of understanding around NICU babies and what the parents go through.”
