An important part of the work that Tiny Lives does aims to support parents and families at this stressful time in their lives.
Social Worker support
“Having a child on SCBU is difficult enough without the rest of life throwing up problems, so I see my role as supporting families whatever the issues may be”
Tiny Lives funds a full-time Social Work to work exclusively on Ward 35 to provide social, emotional, and practical support to families of babies on the unit. This means that there is someone on the Ward that parents can talk to if they need help accessing financial and practical support or if they need emotional support.
Before my daughter came along, I had a fairly stereotypical view of social workers, what they were like and what they did. In the immediate aftermath of the surprise and shock of having my daughter just under 28 weeks, when I was introduced to the social worker for Tiny Lives and the neonatal unit I was a little wary. Yes, I was relatively young and a new single parent but surely I could handle myself? She immediately put me at ease with her gentle and caring manner and in the early days she was far more of an impromptu counsellor.
One of the sad realities of special care is that your world feels like it has stood still, when in actual fact the rest of world is still moving at the same pace you left it. Finances, work, housing and health issues don’t take a break because you need them to. The social worker helped me take charge, making me feel I had the power and authority to make choices for not just me now, but the most important person in the world who was lying in an incubator. As well as helping in filling in forms, applying for permissions and writing letters she also would listen, really listen, and if you felt you could not could speak on your behalf and make sure your fears were answered.
Looking back I feel so lucky that she was working in the department; I would have floundered with the responsibility most practically and emotionally. Without guidance from someone with prior knowledge I would not have known where to look to begin building up the life I needed to for discharge.
When your baby is that small and that sick, the last thing you need to be doing is running wild goose chases all over the city or sitting with your phone on redial, trying to get through to someone. You need as much as time as you can to be with your child. So for someone to be on-site where meetings can be arranged within the same building is an enormous relief. Because of the close workings of special care, they understand that planning things around that 3:15pm tube-feed or cares is actually really important for your well being as a parent and for the baby.
You can find out more about the way that Fiona, our social worker, makes a difference to families on the unit by clicking here. If you are in need of support, please visit our Family Support and Information pages.
Hardship fund and help with travel costs
Research by the special care baby charity Bliss has highlighted the financial costs that families often have to meet when their baby is in special care for reasons such as travel, childcare, loss of earnings and accommodation.
“The travel pass proved invaluable to my husband as our eldest daughter was 3 years old at the time it enabled him to travel between home and Ward 35. It took one little bit of stress away during a very difficult time.”
The unit serves a very wide geographical area and it is not unusual for babies to remain on the unit for weeks, if not months.Travel costs can create a significant financial burden during this time and Tiny Lives provides a small “social fund” for parents, which includes help with the costs of travel, car parking, and emergency refreshements.
Travel passes to use on on buses, trains and the Metro are also provided.
“Having the car parking pass helped enormously and definitely helped to ease some of the pressure we were feeling.”