"Communication could have been better"

I would like to first of all say that we did receive examples of great care for our baby in St John’s SCBU. The individual nurses looking after him were brilliant. However it’s also important to recognise where we think our care as a family could have been better. Ultimately, I think it was poor communication that led to us being frustrated and upset with the situation we were in, and there were a few instances when we were left feeling that things hadn’t been handled very well. It’s hard to pinpoint exactly what contributed towards this other than the culture in the unit seemed to be negative at times.

As parents with a baby in a SCBU and with siblings at home, it is an extremely difficult time and it takes its toll on your mental health. When you are coming in to the unit every day and staying some nights, you feel guilty for being away from your other children and it is little things that can make a positive difference. At times I feel like this was missed. Making sure you check in with parents regularly would be very helpful. I made some lifelong friends in the unit, who I feel took on a lot of my emotional support needs, rather than the staff. Although this is wonderful that I was able to form these friendships, I think there is a place for the staff to also recognise when people are struggling and sometimes just being there to listen is the best form of therapy. I actually felt on a couple of occasions that I was being seen as a pain in the backside by the staff when I was worked up or upset. 

I also felt that clinical notes or decisions weren’t effectively communicated with us, or between shifts/teams. We came in several times to mixed messages and it felt like each professional was making their own judgements and we were caught in the middle of it all. There could be a “ward round handover” such as a diary or electronic service set up so that parents can keep in the loop with decisions that are being made - similar to the nursery journals that are used. This could even be linked to VCreate.

As I’ve said, it’s a shame I have had all this negative feedback to give, as we received some amazing care for which I am forever grateful. But we feel it is important to speak up when things could be improved, as it would make such a positive difference to people’s experiences.

Shout out to the staff for looking after our wee boy and for being there for us. You’re doing a brilliant job and thank you from the bottom of our hearts. The normal chats and banter are what got us through.