Independent Appeal: 'Doing this job makes you realise how much we all take for granted'
Ben Fewtrell's working week is filled with the kind of emotional stress many of us do our best to avoid. Paul Vallely finds out how he and his colleagues at the Rainbow Trust support families with terminally ill children
Paul Vallely is Associate Editor of The Independent where he writes on social, ethical, political and cultural issues. He writes leaders, features and has a weekly column in the Independent on Sunday. He was co-author of the report of the Commission for Africa and has chaired several development charities.
Tuesday 03 January 2012
At a table in Cafe Nero a bearded young man named Ben is poring over his diary. It is written entirely in pencil because so much of what he enters into it has to to be erased, amended or shifted from one date to another.
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He has just come from his monthly meeting with his professional counsellor and is about to visit a 13-year-old with leukaemia whom he hopes to take to the cinema to see Johnny English. A day earlier he had paid his first visit to a five-year-old with a brain tumour. The following day he was down to go to a panto with the brothers and sisters of another child who had just died.
Ben Fewtrell sees a counsellor once a month because of his job. He is a family support worker with Rainbow Trust Children's Charity, one of three being supported by The Independent's Christmas Appeal which runs until the end of this week. The charity offers emotional and practical support to families with a child who has a life-threatening or terminal illness.
But those who do the job need emotional support too. Ben had talked to his counsellor about the dissonance of watching the world around him go about its normal Christmas activities while his everyday business plumbs the depths of human suffering and sorrow which few of us are able to comprehend. "Some stories," he says in a manner which brooks no further questioning, "are too terrible to tell."
The 38-year-old, who worked with boys at a special school for 10 years before joining Rainbow Trust, says: "You have good days when you feel that you have really achieved something and bad days when it all just gets to you."
What he talked about most with his counsellor in December was how to switch off over Christmas. Ben has two children of his own, a 13-year-old daughter and a six-year-old son. "Doing this job makes you realise the things we take for granted," he says. So he counts his blessings? "Every day."
Ben leaves the cafe to head across Greater Manchester to the home of Ted Jay in Cheadle. Their plans to go to the cinema a week earlier were foiled because young Ted had been prescribed a new medication for seizures (he has had a severe brain bleed as well as leukaemia) and Ben had had no previous experience in using it. He has been trained in the intervening week.
On Ted's mantelpiece is a new signed photo from the Manchester City manager, Roberto Mancini. "I see you've got a new dartboard," quips Ben, a United fan. Ted replies with some impenetrable 13-year-old humour.
"Ben has become a real different kind of friend for Ted," says his mother, Penny. "He's part of the family now. We all really trust him. He knows how far Ted can go."
Ted's father, Pete, explains to Ben that Ted does not need to be pushed in his wheelchair now but can just use it for support and push it himself. "Just watch his foot which sticks out to the side a bit at the moment," he adds.
"Ben really takes the pressure off us for a while," says Penny, a woman who displays extraordinary resilience, on the surface at least. "It means Pete and I can spend some time together."
Ben offers different support to different families. Some want him to accompany them to hospital consultations. Bereaved families ask him to go to the shops or school playground with them after their child's death. "I go with them for the first few times," he says. Families appreciate the continuity in support from someone who knew their child before they died and who isn't afraid to use their name and talk about them.
To the children he offers a kind of social life when their school friends can't visit for fear of infection or because they don't know what to do or say. "We play games or do art," Ben says. "I try to be a bit jokey around what can be a really sad situation where everyone else around them is serious or despondent."
As the only male worker in Rainbow Trust's Manchester team, Ben is particularly good with boys. "He's cool. He helps me out," says Ted, with classic teenage emotional inarticulacy. "It's hard to put into words, but I'm very glad he's here."
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