Independent Appeal: Working with terminally ill children is Lucy's dream job – but it takes its toll

How do Rainbow Trust's carers cope with the traumas they face? Alice-Azania Jarvis finds out

In the past year alone three of the children with whom Lucy Poole has worked have died. Even for someone whose job is working with children with life-threatening illnesses the strain has been enormous. Lucy is a family support worker with the Rainbow Trust Children's Charity, offering emotional and practical support to families with children who are very sick. Over the last three years eight of the children she has helped to care for have died. But the past 12 months have been particularly traumatic for her.

Many of the families she has supported were referred to Rainbow Trust specifically for help as a child approached the expected end of life. Still, "you always hope there will be a turnaround," she says. The hardest part is watching the families in pain, she adds.

Like the charity's other 50 family support workers, Lucy has monthly sessions with a trained counsellor to help her cope. "[They are] so important," says one of the counsellors, Lesley Mungar, who is based in Surrey, not far from where Lucy works, around Swindon. Lesley has seen dozens of family support workers over the decade she has been working with Rainbow, but she never ceases to be amazed by them. The monthly sessions give them a chance to discuss their thoughts and feelings frankly and in confidence, she says.

With a background in bereavement counselling, Lesley is well placed to help the Rainbow staff. She generally asks them to give some thought to what they would like to discuss before they arrive, then gives them "space to reflect and emotionally let go". One of the challenges of the job is to help the support workers pick themselves up after their all-too-frequent encounters with death, so that they can continue to support families in extreme need.

Some extraordinary people work for Rainbow Trust, which is one of the three charities supported by The Independent's Christmas Appeal this year. Sitting amid the clutter of the charity's Swindon office, Lucy describes what she does as the job of her dreams. She began her career as a nursery nurse, and it wasn't until 13 years later that she found the job with Rainbow Trust. "I just felt so lucky to get to do it," she says, as we sit surrounded by piles of toys, board games and colouring books.

Lucy reaches over and fishes out a cardboard box. It's a "memory box", something Rainbow Trust gives to the siblings of children who are about to die. "It's something they can decorate and fill with memories of their brother or sister over time," Lucy explains.

The memory boxes help children prepare for their sibling's death, and later on to grieve and understand what has happened to their brother or sister. Grieving properly allows a child to cope much better with their loss. They are then more likely to re-adapt quickly to school life, which eases the strain on other family members.

What Lucy loves about the job is being able to help those in need. Supporting the families of seriously ill children can entail playing with the children, listening to their parents, helping out around the house, taking the children to hospital and arranging appointments. Rainbow's workers travelled 473,000 miles visiting families and taking them to important appointments last year.

Support workers are available to families at times of crisis, constantly juggling needs and priorities to ensure that these traumatic experiences are as manageable as possible. "You meet amazing families, parents and children, and you are constantly learning," Lucy says. "People have no idea – but there are families who are just shut away because going out with their sick child is so difficult." That is where Rainbow Trust makes a difference. But, crucially, the job of a support worker also involves supporting families through the death of a child. Every loss is keenly felt, Lucy says. Coping with death is never easy, no matter how many times you experience it. Lucy's "dream job" is something with which even the most stoic of us might struggle.

The monthly sessions with a qualified counsellor are a godsend, says Lucy. "When we work with the families we are basically working alone. There is always someone at the end of a telephone, but to have someone to talk to in person is great. It helps you to work through your grief."

The supervision offers the chance for the counsellors – because for much of the time that's what the support workers are – to be counselled; for the carers to be cared for. It awards them some much-needed respite after the juggling act they are constantly having to perform. "You can feel guilty, trying to prioritise the families' needs. You want to see them all. The supervision really helps with that. If we didn't have it, the job would be a lot harder."

For the job does not end when a child dies. "We are still very much on board with the families we support after the death of their child," Lucy says. Family support workers strive to provide the unflinching support a family needs in moments of crisis. Whatever has happened the previous day, hour, or visit, support workers like Lucy have to be ready to help the family in whatever way they need it, whether through laughter, play or bereavement support.

"Offering this kind of support to bereaved families is one of the key elements of Rainbow Trust's work," Lucy says. Unlike other bereavement services Rainbow works with families before they become bereaved. The support workers' own counselling enables them to tailor their care to the needs of each family they work with, whether bereaved or facing bereavement.

And because each support worker has several families on their list all the time they have to be able to spend all day supporting one family, whatever might be involved, and then get in the car and go off to support another.

"No matter what has happened," says Lesley Mungar, "they need to arrive at the next family with a fresh face and a smile. It's amazing. And it's something we need to help them with."

Appeal partners: Who we're supporting

Save the Children

Save the Children works in 120 countries, including the UK. They save children's lives, fight for their rights and help them fulfil their potential. Save the Children's vital work reaches more than 8 million children each year - keeping them alive, getting them into school and protecting them from harm.

The Children's Society

The Children's Society provides vital support to vulnerable children and young people in England, including those who have run away from home. Many have experienced neglect, isolation or abuse, and all they want is a safe and happy home. Their project staff provide essential support to desperate children who have no-one else to turn to.

Rainbow Trust Children's Charity

Rainbow Trust Children's Charity provides emotional and practical support for families who have a child with a life threatening or terminal illness. For families living with a child who is going to die, Rainbow Trust is the support they wished they never had to turn to, but struggle to cope without.

At The Independent we believe that these organisations can make a big difference to changing many children's lives.


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