"Our experience of Special Care"

Our baby was recently looked after for 7 weeks in the special care baby unit after being born prematurely. We will always be grateful for the excellent care he received and during our time there we met some truly wonderful, caring staff who I trusted completely to give him the best possible care (especially during the night when we had to leave him). Not only were the nurses caring to our son, it was a family centred approach and as a first time mum who was pretty anxious (getting my head round feeding tubes, understanding what the monitors meant, home oxygen etc) a few of the staff stood out in terms of the support they also gave me in terms of reassurance and helping build my confidence. Thank you so much!

I feel like a different person since I first arrived at the unit with my baby. The breastfeeding support staff were also very dedicated, patient and helpful. We were in the unit longer than I had anticipated as there were a few blips in the road but thankfully we are home now and can enjoy our son properly. I have a strategic role in health and social care policy and planning and this was my first time on the other side so to speak as a 'service user' and it gave me a real insight into how truly fortunate we are to have the NHS. 

There were however some aspects of our experience that were disappointing and I would like to suggest the following as areas for improvement

1. The facilities are pretty dreadful. For example, there was one toilet in whole unit and on two occasions I had to report issues with cleanliness in relation to dried blood. Staff did act on this immediately. I must note that the infection control procedures in the special care room were robust and staff always used gel/reminded visitors re hand washing. The parents kitchen was tiny and never looked that clean so I never used it. The lockers are far too small. There is no water cooler in the unit. This is really poor when mum's are bf/expressing and need to keep fluids up. I must have bought 100s of bottles of water during my time there. The rooms in Transitional care are not great - far too warm and no fans were available. It meant I did not want to stay long there at all! 

2. Communication was pretty poor. With hindsight I should have perhaps arranged an appointment with the lead consultant for my son to get a proper update, but instead I relied on snippets of information following the ward round each day. This led to me feeling uninformed at points about how my son was doing and our expectations were not managed well. For example, I discovered he had chronic lung disease from a form in relation to a sleep study. This had never been discussed with me prior to seeing it on a bit of paper. Similarly results of chest x rays were not properly communicated. Therefore when it became apparent that our son needed to go home on oxygen this came as a major shock to us as we had not been kept informed throughout his journey that this was a real possibility.

3. Leadership. It was not clear who was in charge on each shift. There was a skills mix of nurses, midwives and MCAs but I never really knew who to go to if I had any issues to discuss. I did finally work this out several weeks in and I must say the person in charge of the unit was lovely and supportive but it might be useful in future for it to be made clear to parents who was who. There was also no consistency in terms of the medical staff and my son was seen by a variety of consultants so again I was never sure who was ultimately responsible for managing my son's care.

4. Staff shortages - it was clear to me at points that the unit was under staffed. Often I overheard conversations about the staffing situation and staff being pulled from other wards to help out. On one occasion at handover I heard someone coming onto shift who was openly saying theye had never been in the unit and wasn't really sure what they would be doing. As an anxious parent this did not fill me with confidence as I left my son for the night. I think sometimes staff forgot that parents were in the room..

5. The move to Transition Care is quite daunting as you become so used to the monitors in special care that the first night in TC without them is quite terrifying. Perhaps a staggered approach would be better so for example the last few days in special care perhaps my son could have been taken off the monitor during the day while I was there so I was more prepared.

Overall, I would like to thank the wonderful staff in the unit who do a fantastic job in tough circumstances (I think the nurses in particular are underpaid and overworked). Please do not take my suggestions as criticism, rather some suggestions for how the unit could improve to be even better.