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.
Feb 9, 2016

Charlie's Story

Charlie, Sam and Amy-Louise
Charlie, Sam and Amy-Louise

Emma was five years old when she died from Leukaemia. She had spent the previous nine months in hospital. Her family was supported by Family Support Worker Steve and Family Support Volunteer Worker Annabel. Emma’s mum Charlie explains just how hard things had got: “Before Rainbow Trust it was really hard, I never got a break and had just no time out plus my other children weren’t getting the attention they needed. It’s hard to give your sole attention to children when so much of it is focused on your sick child”.

Steve and Annabel would take Emma’s elder sister Amy–Louise and brother Sam out for the day and would also provide emotional support to Charlie during those difficult months.

Emma chose to spend her last days at their local hospital and was taken there on Christmas Eve. Charlie remembers: “She had 100 visitors that night, including Annabel. But it was only Annabel that Emma allowed to stay in the room. This helped me massively as it showed how much she trusted her and allowed me out to speak to the other visitors.”

Emma died on New Year’s Day.

Rainbow Trust has continued to support the family after Emma’s death. Steve and Annabel helped Sam and Amy-Louise read at the funeral and Steve also read Charlie’s words for her as she was too emotional to do it on the day.

Since Emma’s death, Charlie has found it hard to leave the house and often has panic attacks if she does. Charlie says, “it’s mostly because for 2 years I didn’t have any time for myself, I just needed to stop and pick myself up and I decided to just stay indoors to do this.”

However, Rainbow Trust has helped maintain a sense of normality in the house. During the summer holidays Steve has taken the kids out for breaks and taken them swimming and Annabel will spend time with Charlie and talk to her.

Charlie describes how important this support has been: “You’ve had no life bar the hospital for two years and then when Emma died, it stopped. I had no idea what to do; looking after Emma was my life. They haven’t just helped life have some normality; they are a life-saver. That time after the death, life goes on, friends disappear, go back to work, but Rainbow Trust are still there.”

Rainbow Trust has also helped Amy-Louise and Sam cope with Emma’s death as Charlie explains: “The kids have no idea what to do with the aggression that they have from grieving, they have a psychologist who comes but Steve and Annabel will take them off separately when they need it or together if that is best”.

Charlie could not be more grateful to Steve and Annabel: “For me the support was really important at the funeral and leading up to when Emma died. I’ll never forget that. That is support; that is what I’m talking about.”

Nov 24, 2015

What Do We Do ?

The following report shows the sort of support that our Neo Natal Family Support Workers give in an "Average" week.

Rainbow Trust Children’s Charity launched a unique Neonatal Family Support service working with the Chelsea & Westminster Hospital in London. The service helps families cope with the pressures and complexities of having a new born baby in intensive care.

I joined Rainbow Trust in September 2014 as the first Neonatal Family Support Worker. Working with neonatal families is something close to my heart as I, myself, spent time on a neonatal ward as a baby.

My week usually starts on a Friday when I do all my paperwork and work out where I need to be for each day of the week.

Monday

So, today I collected Katie, mum of Lauren, her daughter, and took them to a full day of doctor’s appointments at Great Ormond Street Hospital. Lauren was born 13 weeks premature and spent a long time on the neonatal unit. She was finally sent home when she was six months old but, due to her chronic lung disease, she is 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 on her own but transporting a baby and all that comes with a normal baby, an oxygen tank and herself would be close to impossible for Katie on her own.

Once we got to Great Ormond Street Hospital, Lauren went straight in for her CT scan with Katie following. After the scan, Lauren was scheduled for an ultrasound followed by an appointment with neurosurgery.

As with most hospitals, appointments cannot always run on time and children and parents spend a lot of time waiting around for their allotted time.

Lauren and Katie were finally finished with all their appointments and I took the pair home by 6pm that evening. 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.

 Tuesday

 Today I am taking Laura to visit her two month old daughter, Susan, at the Chelsea & Westminster Hospital. Susan is in the Neonatal Intensive Care Unit as she was born at just 26 weeks.

On the way to the hospital Laura talks about so many things including Susan, her family, their holidays and Laura’s childhood. Spending the whole day on the unit can be very quiet and lonely for Laura so having some time to talk about everyday things in the car makes the long wait that much more bearable.

 Once Laura is on the ward with Susan, 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. This time also gives me a chance to share what I can do to help and support families on the unit.

 After the meeting I went to find Laura and meet her precious baby that I have heard so much about. When Laura was ready to leave I took her home which gave her one day in the week where she didn’t have to battle public transport to visit her fragile baby in hospital.

 Wednesday

 This morning I am taking Helen, mum of Alex, Finley and Aisha to visit their baby sister who is in intensive care at St Mary’s Hospital in London. The children aren’t allowed into the ward for long so while Helen spent time with baby Janine, I took the three children to the hospital playroom where they played and we made “Get Well Soon” cards for their sister.

 At the end of the day Alex, Finley and Aisha were able to see their sister for a while and once they were ready, I drove them all home.

 Thursday

 Part of my role is assessing families that are newly referred to Rainbow Trust for support. During these meetings I discuss, in more detail, what we can offer and the sort of support that might benefit the family. Today I had a meeting with a family that is new to Rainbow Trust. We talked about what their needs are and how I might be able to help through this difficult situation. It gives them a chance to find out what we are about and to ask any questions they might have after being thrown into this new unexpected world of life on a neonatal ward.

 Friday

 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 are facing. It’s also a chance to catch up with colleagues who know and understand what our work is like.

 Being in the office means I can catch up on admin from my busy week which includes making case notes, follow up phone calls and planning for the following week.

 It’s a busy role but I am enjoying it, meeting new people and helping families in a situation that no parent ever hopes to find themselves in.

 

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.

 

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