Physical Health United Kingdom Project #23589

Sponsor a Family Support Worker for Sick Children

by Rainbow Trust Children's Charity

Project Report | Jul 14, 2017
Introducing Zak

By Zak | West London Family Support Worker

My Team and I

I’ve been working for Rainbow Trust as a Family Support Worker for five years and I love making a difference in people’s lives. Family Support Workers work with up to 25 families with a seriously ill child, at any one time, providing help with whatever they need. Each family is unique, so the support we offer is different for each one. Our support is flexible and understanding. Our Family Support Workers work with families to help them cope in extreme and uncertain situations, so that they do not have to cope alone.

I support families by taking them to the hospital so they don’t have to worry about travelling with a sick child on public transport or about traffic and finding parking. All of these little things add up, especially when you’re so worried about your sick little one.

I spend time with families on the ward - appointments can take all day; they frequently get pushed back or cancelled without notice. It’s hard for parents – they worry about what their child is about to go through and often need a sensitive friend to keep them feeling positive.

I also spend dedicated time with siblings at the hospital, to keep them entertained. I can take them to the playroom or sit with them while they do their homework, away from the bustle of the wards. One of the mums I support is seriously ill herself so I help with carrying things and can give her a break by spending time with her sick teenage son. She’s already tired being on chemotherapy herself, so having me there to help makes a big difference.

I also provide emotional support to parents, which gives them a chance to talk about how they are coping. Single dads are particularly grateful for the support I can give them. Having another man to talk to really helps, as I have a better understanding of what they are going through. For two parent families, dads take comfort knowing that there is someone to support mum and the children while dad has to go out to work.

Many family stories stay with me and one that I have never forgotten was a family whose four year little boy was told there was nothing the doctors could do for him. His parents were told they’d have to turn his life support machines off. I watched them struggle with the idea of choosing to let their child die. They couldn’t do it and I am so happy to say, he is now a happy and healthy little eight year old. Children are so strong, even when they seem to have nothing left to fight with.

I love hearing things like that. I love being a part of that.

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Apr 18, 2017
Isabel and Family

By Jenny-Anne Dexter | Project Leader

Sean and the family

Isabel was just a typical happy, healthy seven year old child until one morning in 2013. When she woke up, she was unable to swallow or hold her head up – all she could do was cry. She spent 16 days in intensive care. She was unable to move independently, feed herself or verbally communicate but the doctors were unable to determine what had caused this. Isabel still doesn’t have a diagnosis.

In October 2013, Andrea, Isabel’s mum, was introduced to Sean, a Family Support Worker in the Manchester Care Team. After the meeting, Sean spent time with Isabel at the hospital to give Andrea a couple of hours to do whatever she needed, for example, the washing or even a couple of hours sleep.

Rainbow Trust provides support to the whole family. “That’s the good thing about Sean – it doesn’t matter which one of us needs him at the time. Rainbow Trust is so versatile because whatever you need at that moment, that’s what you get help with. It’s just nice having somebody there that you know is there for you.”

Due to Isabel’s condition, the family had to move to a bungalow and Sean was there to help out. It was a lot further away from school, so he would drive Isabel’s siblings, Kaitlin, 4 and Eden, 6 to school. He also helped get Isabel ready every Thursday morning until she started school.

As well as providing practical support, Sean also helps Andrea emotionally. “He was there from the start so he knows everything and he seems to sense when I’m having a bad day, because he’ll ring at the right time”.

On one occasion, Isabel’s school was closed and Andrea needed to go food shopping. Unable to push both Isabel’s wheelchair and a food trolley, she called Sean and he came over to help. "If anything goes wrong and I need help, I know that all I’ve got to do is ring Sean and if he can help, he will.”

Despite Isabel’s life threatening condition, Andrea describes her as really happy. “She may not be verbal and she can’t do anything for herself but she’s happy because she’s got some really nice people around her.” Rainbow Trust will be there to support Andrea’s family for as long they need.

Every donation you make to Rainbow Trust Children’s Charity will support families like Andrea’s, for whom the simple things make a huge difference for the whole family. Thank you.

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Jan 19, 2017
Niamh and Linda

By Jenny-Anne Dexter | Project Leader

Storytime for Linda and Niamh

Niamh was a typically active little girl until she was 18 months old. She could crawl, stand up, was trying to walk, could eat solid foods and play like other children her age. Her parents, Claire and Peter, noticed that this changed one day when she suddenly couldn't do all of those things anymore. She stopped crawling and would choke on solid lumps of food.

After eight months of stressful and worrying tests, Niamh was eventually diagnosed with Metachromatic Leukodystrophy, a progressive genetic disorder resulting in the signals from her brain not being able to get through to her muscles via the central nervous system.

A physiotherapist who had been working with Niamh contacted Rainbow Trust Children’s Charity, and Family Support Worker Linda came into the family's lives.

“Linda phoned to say hello and to arrange a time to come round for her first visit. I could have held onto her all day, with the relief at being able to talk to someone freely about Niamh and what it was like dealing with the diagnosis we had waited so long for.” Claire, Niamh’s mum

Linda came to the house weekly and helped with Niamh’s care. Linda also spent time with Niamh on her own, giving Claire vital time with her older daughter, Isabel, who often missed out on important one-to-one time with mum because of Niamh’s condition.

“I felt like I was letting her down and wasn't there for her like a normal mum would be. That’s a huge benefit of having Linda's help and she has improved my relationship with both of my daughters.”

Niamh isn’t able to attend school due to the risk of picking up infections, but Linda brought along sensory equipment for Niamh to help stimulate and engage her, which she loved.

“After months of singing and seeing how much Niamh enjoyed it, Linda helped me arrange for Niamh to have special music therapy lessons. Another Family Support Worker, Sean, now sees Niamh fortnightly to give her a therapeutic music session. I couldn't believe it when Niamh started single along. I burst into tears and covered my little girl in kisses, I was so proud of her!” Claire, Niamh’s mum

Niamh is doing well generally though does struggle at this time of year because of the cold weather and Rainbow Trust will continue to support the family for as long they need.

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