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.
Nov 24, 2015

Hospital Transport

Here is a short report from one of our Family Support workers that highlights how important providing transport for our families is.

 

I am working with a family who have a 14 year old boy undergoing treatment for leukaemia and has his bloods checked at his local hospital.  Recently the family got a call to say he urgently needed a transfusion and could he be in Great Ormond Street Hospital at 8 am the next morning.

Mum rang our 24 hour helpline and asked for help as her car had broken down and hospital transport could not be arranged at such short notice.  I arranged to pick them up at 6 am the next morning to take them to GOSH and stay with them until the transfusion was done.   We finally left for home at 9.30 pm that night.

 Without Rainbow Trust’s transport this boys urgent transfusion would have been delayed and put his recovery at risk.

Aug 21, 2015

Joe's Story

Rainbow Trust is the only organisation to care for families from diagnosis, during treatment, and if needed, through end of life care, bereavement and beyond.  This support is not available elsewhere. 

“There’s still that connection with Joe when Chris comes.  There isn’t anybody else that comes in who knew Joe before.”

Sue, Joe and Adam’s mum 

Joe’s story

In 2007, Joe, aged nine, started feeling sick.  A scan revealed a large brain tumour.  Most of the tumour was removed and chemotherapy and radiotherapy treatment was successful.  However, in 2012, the cancer returned in his spine and the following autumn, Joe was not able to walk and he stopped going to school.  His family was referred to Rainbow Trust for support. 

Chris, a Family Support Worker from our Swindon team began supporting his family.  Joe wanted to record the time they shared, so together with Joe’s younger brother, Adam, they made a photo book about their adventures. 

Joe managed to see the album finished, before he died earlier this year, aged 16.

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.

 
   

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