English epilepsy policies go to Africa

The National Centre for Young People with Epilepsy in Surrey provides care to 5,000 children with severe epilepsy.

The centre also runs an outreach programme to help members of the public to understand the condition better.

" It's rather unique in the world "
Bob Haughton, chief executive

Doctors in Africa hope the programme could also be put to use in the developing world.

They have established a scheme whereby children send photographs and videos to others with the condition on the other side of the world.

The scheme helps children in Africa to realise that they are not the only ones with epilepsy.

Improves understanding

"Understanding of epilepsy out there is very poor. They have very few resources," says Peggy Adenham, a teacher at the centre.

"Young people here send videos and photos and write to these children. It helps them to understand that there are other people with the condition in other parts of the world."

The Surrey centre is providing pioneering care for children with severe epilepsy.

It provides education and medical care on one site. The centre works in conjunction with doctors at Great Ormond Street Hospital in London.

"It's rather unique in the world," says Bob Haughton, the centre's chief executive.

"Between the Great Ormond Street Hospital epilepsy service and our own we constitute the largest child epilepsy service in the world.

"It's unique in that there are very few places in Europe that provide education treatment and care for children. Indeed we are not aware of any such centre in the United States."

The centre is particularly helpful to those children who are sometimes excluded from mainstream education because of their condition.

" Children with epilepsy are often misdiagnosed "
Belinda Perry, medical director

"We enable them to access opportunities that may have been denied them in mainstream education because of their epilepsy," says Chris Davis, director of education at the centre.

"The type of examples of this might be swimming, practical activities like woodwork, cooking metal work - areas where the risk of a fall or a sudden seizure staff may make the collective decision that it would be dangerous for that person to remain in the classroom."

Children at the centre receive prompt medical treatment if they suffer a seizure. Afterwards they are allowed to rejoin fellow pupils and resume their activities.

The policy has helped children to feel normal. Many have also seen the number of seizures they suffer fall.

The centre also ensures that children receive the right medical care.

"Children with epilepsy are often misdiagnosed," says Belinda Perry, the centre's medical director.

"There is a 30% likelihood of children without epilepsy being given the label of epilepsy and being given medication for a condition they don't have which can sometimes go carry on for the rest of their life.

"We have facilities for recording exactly what is happening so the experts can review exactly how the seizures present."

The centre has been visited by doctors and other experts from around the world and many of its practices are now being introduced in other countries.

This story is featured in the radio programme Health Matters on the BBC World Service.

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