Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
Aug 20, 2015

How We Help

In July 2014, baby Paola was born at just 24 weeks, over three months before her due date and weighing less than two pounds. Due to her extreme prematurity, Paola suffered from a number of health problems and was on the neonatal unit at Chelsea & Westminster for a long time. Rainbow Trust Children’s Charity began working with the whole family in early August when the baby was 10 days old. Dora, Paola’s mother, was understandably, very distressed having to visit her baby in the hospital, whilst juggling the care of her three other children, Porter (5), Parker (4) and Mona (2). Being so young, they were unable to visit their new sister on the neonatal unit due to the risk of infection. The three children were all exceptionally lively and very excited at the arrival of their baby sister but often confused as to why they couldn’t see her. With their father at work, Dora was unable to visit Paola for the four months she was at Chelsea & Westminster hospital. She was then moved for a month to Northwick Park hospital.  

Amy, our first Neonatal Support Worker, was able to offer transport to and from the hospital at least twice a week which meant that Dora had precious time with her baby daughter. At the same time, Amy provided sibling support so Dora knew that her other children were being looked after. Amy took the children to playgroups, something they had never done before due to a lack of transport or resources at home.  The difference these outings made to the siblings was noticeable. Prior to Amy’s support, the siblings would get angry and upset whenever Dora went to visit the baby, but started to look forward to their outings with Amy.  She helped with school runs especially on the way to or back from the hospital and helped with shopping, which gave Dora some much needed respite. 

In late December, Paola was discharged from hospital and was able to go home on oxygen. Amy took the three siblings out for most of the day so that Paola’s parents and health worker had an uninterrupted day moving her home with her oxygen tank. 

When the siblings got home, Amy explained what was happening and why their baby sister was connected to the equipment.  She had to keep them from jumping on Paola as they were so pleased and happy that she was finally home! 

Paola still has numerous hospital appointments but she is at home with her parents and siblings. Rainbow Trust continues to support, providing transport, hospital assistance and sibling care. Due to the constant demand of the young children, Amy offers respite for Dora, taking the children to their favourite playgroups, which allows Dora some alone time with her baby. 

Since Paola was born, Rainbow Trust has provided over 150 hours of support to the family. Dora is always extremely appreciative and grateful for all the charity’s support and involvement and explains how excited the children are when they see Amy’s car outside the house, as they know it means a day of fun and laughter.

Aug 20, 2015

Home Sooner Than Later

My support for K and her family sometimes involves transporting the family to and from the hospital for appointments. On this particular day, I was visiting K in hospital, she was an inpatient and had been admitted with an infection. K is 12 months post heart transplant and has to be monitored during any infection. She had been in hospital for a week. Dad informed me that K was being discharged that afternoon. He told me that he could phone mum who would have to get K’s sister ready before coming to pick them up (mum and sister have cardiomyopathy and would take a while before they could come to collect them) 

I advised dad that I had two other visits but if he wanted transport home, I could take them on my way to my next visit. Dad was very appreciative and accepted my offer. 

On the journey home, dad was able to discuss concerns about his partner and daughters condition. I enabled him to talk and I listened. 

This shows how Family Support Worker’s can be flexible with the support they can offer families. This support meant that the family were home within half an hour of being discharged instead of hours waiting for hospital transport or K’s mother. 

It also allowed mum to relax and not rush to leave the house. Both herself and K’s sister were able to be at home, waiting for K and dads long awaited return home

Aug 20, 2015

Peter's Story

Peter was two years old when he was diagnosed with leukaemia.  He was admitted to hospital in Oxford for treatment.  Flora, his mum, stayed with him and her husband took his twin brother, Thomas, home to Reading.  

The family was quickly referred to Rainbow Trust and introduced to Family Support Worker, Jess.  She takes Flora and the boys to hospital appointments, plays with Thomas while Peter is in treatment, and when they are both home, she plays with them together. 

Peter is very clingy to his mum, which means that Flora struggles to do anything without them, so having Jess as a playmate helps her immensely.  She can take a shower or do some chores, which gives her some semblance of a normal life.

It is heart-warming to know that there are people who dedicate their time to others.  Our Family Support Worker, Jess, has been an angel.”      

Flora, Peter and Thomas’ mum

 
   

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