Hospital Transport for Terminally Ill Children

I am the first Neonatal Family Support Worker, working with the Chelsea and Westminster Hospital. I help families cope with the pressures and complexities of having a newborn baby in intensive care. Here are some highlights from my week:

On Monday morning , I collect Katie, Lauren’s mum, and take her to a full day of hospital appointments at Great Ormond Street Hospital. Lauren was born 13 weeks premature and spent a long time on a neonatal unit. She was finally sent home when she was six months old but, due to her chronic lung disease, she’s constantly on oxygen on which makes travelling on public transport very difficult. Lauren’s dad works so Katie is unable to get to and from the hospital with Lauren, her oxygen tank and all she needs, on her own. It’s a long day for anyone but especially for a mum and a small baby.  Without my support Katie’s husband would have had to take a day off work or Katie would have had to battle on public transport with Lauren and all her equipment.

It’s Tuesday and today I’m taking Lisa to visit her two month old daughter at the Chelsea and Westminster Hospital. Samantha’s in the Neonatal Intensive Care Unit as she was born at just 26 weeks.

Spending the whole day on the unit can be very quiet and lonely for Lisa, so having some time to talk about everyday things in the car makes the long wait that much more bearable. Once Lisa is on the ward with Samantha, I attend a ‘Family Matters’ meeting with a group of other health professionals to discuss any families that may benefit from Rainbow Trust’s support. After the meeting I went to find Lisa and when she was ready to leave, I drove her home. Lisa makes that journey most days of the week, so today was a special day, free from the stress of battling public transport.

On Wednesday morning I take Helen, mum of Alex, Finley and Aisha to visit their baby sister who’s in intensive care at St Mary’s Hospital. The children aren’t allowed into the ward due to the risk of passing on infections to the babies, so I took them to the hospital playroom where they played and we made “Get Well Soon” cards for their sister.

Part of my role is assessing families that are newly referred to Rainbow Trust for support. On Thursday I met a new family. We talked about what their needs are and how I might be able to help them through their difficult situation. It gave them a chance to find out what Rainbow Trust can offer, and to ask any questions they might have after being thrown into this new unexpected world of life on a neonatal ward.

Friday is our team meeting day in the office. We talk about the families we are supporting and have the opportunity to share any concerns or challenges we’re facing. It’s also a chance to catch up with colleagues who know and understand what our work is like. Our Family Support Workers provide bespoke support to families in whatever way they need it and every day is a challenge, but I wouldn’t swap it for the world.