Where the door is always open to families in need

THE beige door is almost camouflaged in the dry-stone wall. With the Safeway supermarket declaring its presence next door in loud reds and greens, and the newly-painted roadway jumping out to greet your gaze with its red cycle lanes and bright white lines, it appears even more insignificant.

Hundreds of people will have driven past the door, completely unaware of its existence. But behind it lies Gilmerton House, a service run by National Children’s Homes Scotland that is making a real difference to the lives of families of special needs children.

And now it’s about to step out of the shadows. A £200,000 appeal to raise money to expand the services it offers to children and their parents has just been launched - with celebrity backing.

Crime writer Ian Rankin has given the charity his blessing. And, although his seven-year-old son Kit who suffers from Angelman’s Syndrome has never yet had to use its services, Rankin is all too aware of how important respite is for parents who have to cope with disabled children.

"I would urge everyone to get involved and help raise money for this vital work," he says.

Gilmerton House has been welcoming children through its anonymous facade on Gilmerton Road for the last two years, giving them a home from home, and their parents valuable respite time.

Rankin’s appeal has been echoed by the parents who use the service. Among the first people to attend Gilmerton House were Clare and John Carson, whose 14-year-old son David has Angelman’s, a condition which produces severe intellectual and physical disability. He needs round-the-clock care, yet the family from North Berwick also have ten-year-old triplets to look after.

Clare says they have found the respite service of enormous benefit.

"This is something we had been longing for and we have been absolutely delighted with what has been provided," she says.

"We have found it so good and we hope more services of this type will develop. It is something that is very much needed." Children who use the service range from the severely physically disabled to those with behavioural or learning problems that can be difficult to control, including severe sleep disorders, hyperactivity, seizures and aggression - all problems for which respite care is vital.

Carol and Mark Robbie, from Livingston, use Gilmerton House regularly so they can take a break from the constant care and attention their daughter Samantha requires.

The 14-year-old has never had her condition fully diagnosed, but Carol believes she suffers from a mixture of autism and other learning disabilities.

"She is very tiring," Carol, a dyslexia support teacher admits: "She never stops. It’s like some sort of Chinese water torture. It really takes it out of everyone. And because there’s not a lot of support available anywhere really, finding this place has been fantastic.

"It is wonderful. When we heard of it at first as a place for children with challenging behaviour, we weren’t too sure, because we immediately thought of extreme violence. But as soon as we came here we realised it was perfect.

"Sam loves it. She comes home happy when she’s been here, it’s as much a holiday for her as for us. And the physical and emotional benefits last long after the visit."

Both Carol and Mark are full of praise for the help they get from Gilmerton Road which includes monthly outreach visits when a member of staff takes Samantha on trips to the cinema or to the seaside. "The staff have an energy and enthusiasm and a real genuine care for the children they are looking after," says Mark, a cryogenics engineer. "It has made a massive difference to us."

Carol adds: "West Lothian Council pays for Sam to come here which also helps.

And the fact that she is here has meant that I was able to study for my teaching qualification."

Although the project is run by NCH Scotland, it is a joint partnership between the charity, Lothian Health and the four local authorities in Lothian.

Project staff work with families to identify their needs then plan how best these can be addressed. The service caters for young people right up to the age of 19.

In addition, there’s the outreach service which provides support both in the child’s home and at school. At its most intense, this could involve four hours a day with a particular child, while a round-the-clock service to cope with emergencies is also available.

"Families can cope better at home when they know they will have time to recharge their batteries during the regular respite breaks," says Barbara Wright, the project manager.

"They can be confident their child is getting first-class care in a small, home-like centre with trained staff that they trust." She says around 50 families have been helped in the project’s first two years.

"Until the project was established, families were mostly left to cope on their own a lot of the time. This is about helping families both at home and in the centre to prevent a crisis developing.

"It is cost-effective because taking children with this level of dependency into long-term care is expensive. It has significantly improved the quality of life for the children and their parents."

For 11-year-old Adam, the Gilmerton Road Project is known only as Angela’s house. Angela is his key worker and his weekly trips and occasional overnight stays are spent in "her house". Adam is autistic and has his own way of doing things. He likes to see cars with their door shut, which can prove difficult in car parks full of strangers’ cars. He sometimes likes to sit for lengthy periods after a car or train journey until he is ready to move on to something else. Attending to Adam’s needs can be time-consuming, particularly when his two brothers need attention too.

Although his mother was initially anxious about letting Adam stay in what was a strange place, it has become almost a second home to him. Adam has benefited from the project’s help, as has the rest of his family. There is now time to spend with the other boys while Adam is busy with the wide range of activities at Gilmerton House.

He has also become more independent and his speech has improved in the time he has been at the project. One of the regular questions he asks these days is when next will he be going to Angela’s house.

For more information about the Gilmerton House appeal contact Karen Moore at NCH Scotland on 0141-332 4041.