Help and understanding for families

18th September 1998 at 01:00
The sun shone on Rachel House the day I visited, pouring in through the open French windows on the ground floor. A fountain burbled in the garden and bells tinkled from a pagoda. A man was pedalling a giant tricycle along a twisting path through the flower-beds, his frail blonde daughter on his knee. Scotland's only children's hospice has something of the fairytale about it.

Andrea Cail, the head of care, describes their job as "offering friendship and support to the whole family who have a child or children with a life-limiting or life-threatening condition." She says: "We've never found an easier way to put it."

Rachel House is run by the Children's Hospice Association Scotland, which receives support from the Scottish Office and health boards, but also relies on charitable fundraising. Around 120 families from all over Scotland are accommodated each year for a few days or a week at a time. It is a place for them to relax and refuel.

There is a paid staff of 40, and 60 volunteers. "About half the paid staff have a nursing background, others are physiotherapists, psychologists, teachers. But we all do the same thing, we are all carers," says Cail. "A big part of what we do is making the most of every day and every opportunity. You can only do that if you have a lot of activities." So the long building unfolds into a toy-filled playroom; a sound-proof music and computer room; a multi-sensory room where huge coloured bubbles, a water-bed, and myriad lights and sounds make a little wonderland; a Jacuzzi; a soft-play area; and then the quiet spaces where people can talk through their problems or have some time on their own. But the heart of the building is the big sitting and dining room where families gather for meals and chat.

"There is a lot of ignorance about what it is like having a healthy child at birth and then getting a diagnosis of a terminal illness," says Cail. "It is particularly difficult for parents of a child who has had six or eight years of healthy life.

"As the child becomes more dependent and leaves mainstream school, their circle of friends and the parents' support network falls apart. People don't know how to respond. There is a lot of sympathy, but parents need hope. They still need to go to the pub and have a laugh. And the children still have a lot of life to live too."

The Cochrane family has been visiting Rachel House for two years. Agnes has fond memories of the time spent there. "It's relaxing. You don't have to worry about Anne-Marie. I usually sleep, go for long walks, read. There's always somebody to talk to and they really understand.

"When we were there a few months ago we actually went out together as a family. It was the first time we'd all been out together for years. We all went down to the beach - Mum and Dad and Annette and Anne-Marie and me. It was really special."

Rachel House, Kinross, tel: 01577 865777

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