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. 

A short time after my grandaughter Erin was born, she was diagnosed with a number of serious health issues including abnormalities of the arteries in the kidneys. She spent three months of the last year as an in-patient and had to attend over 30 consultant appointments, all in London, which is an hour and a half’s drive away from home. 

Sarah, a Rainbow Trust Family Support Worker started supporting my family after we were referred to the Charity by a community nurse. Sarah helps out with hospital appointments, driving my daughter Helen and Erin up to London, so Helen doesn’t have to worry about parking or traffic, which I am so grateful for. Instead she can spend that time with Erin, taking her mind off any difficult tests or treatments she might be having when she gets there. 

Erin has got used to having blood taken, and holds out her little arms now for the nurses, but she gets distressed when she has to be held for certain tests or treatments. Once it’s all over Sarah likes to take her out of the room for a walk or a play, while Helen talks to the doctors. It just gets her mind off of it and calms her down. 

She also comes to the house and plays with Erin, which gives Helen a break. As a toddler, Erin needs to be watched all the time. As her body is so fragile, we need to keep an eye on her constantly, which can be exhausting. The hours of support that Sarah gives us are so precious and make our lives feel that bit more normal. 

Erin is a joy to watch when she’s feeling well. She loves to play outdoors with her grandad and I love spending time with her too. 

Rainbow Trust’s help makes our lives so much easier and has made a tough situation more bearable. Sarah’s support makes such a difference to our lives, we couldn’t do this without her. Your donations to this project is giving families like mine more reasons to smile each day.