Parents of disabled children will today be given a boost by an announcement that the government is to provide £1.5m for a national information centre and helpline. The service will be run by Contact A Family (CaF), the only charity who provide support and advice to parents whatever the medical condition of their child.
Families who are given devastating news of a child's disability often complain of feeling isolated at a time when they are most vulnerable. Every day, more than 60 children in the UK are born or diagnosed with a serious disability, and the vast majority are cared for at home. Parents may be told their child has Down's syndrome, is autistic, or suffers from one of the 1,000 rare syndromes and disorders. Yet it is rare that families are given the support they need. The feelings of isolation, both emotional and physical, can often be acute. Helen and Gary Cumberland were devastated on learning from a geneticist that their two-year-old daughter, Alex, was suffering from Coffin Siris syndrome - a genetic disorder so rare that there are only 79 known cases worldwide.
The family was in desperate need of support. Sufferers of the syndrome are distinguished by small stature, mental retardation, pronounced facial features and feeding difficulties. They also have a short life expectancy. But the only information the Cumberlands were given was the address of a website giving details of the condition, and an appointment to see the geneticist again - in two years' time.
Cases like this have prompted ministers to provide extra funding for services. For the first time, there will be a new national telephone advice and helpline, which will include an 0800 number for disabled children, their parents and carers. The national information centre will also be able to provide information on all medical conditions affecting children, as well as putting families in touch with support groups or other families who have experienced a particular disabling condition. It is hoped that the funding, to be phased in over the next three years, will enable the charity annually to provide support to 21,000 families of newly-diagnosed disabled children. Francine Bates, chief executive of CaF, believes the cash will make a huge difference to thousands of families. "All too often, parents are left to stumble on information about their child's condition without knowing what support groups are around or what benefits they are entitled to," she says.
"We have a fantastic database with all the information about the medical conditions and support groups that exist. But, up until now, our resources have been very limited. We know that parents feel very isolated and vulnerable. Many want to talk to someone, as well as get information about their child's condition. They can find it very useful talking to other families who are in a similar situation. Now we should be able to provide that kind of service to everyone."
For the Cumberlands, the pressures of coping alone with Alex, while looking after their two other children and a seriously ill relative, put their marriage under an enormous strain.
"It was only when our marriage started cracking up that we received help. I rang a social worker and she put us in touch with Contact A Family," says Helen.
That was in June last year. Over the next few months, the Cumberlands, who live in Blackburn, Lancashire, made contact with four other families with children suffering Coffin Siris syndrome. "Being able to talk to families in the same situation as yourself really does help," says Helen. "You need it otherwise you really would go to pieces."
Alex is now three-and-a-half. Helen is setting up the Coffin Siris Support Network in the hope that other families will not have to go through her and Gary's experience. Bates says: "Having a dedicated freephone helpline should make a terrific difference. But our work has only just begun".
Contact A Family is on 020-7383 3555; the Coffin Siris Support Network is on 01254-727101
