Eleven-year-old Ben Broke-Smith should have started at his new secondary school last week. A keen swimmer, highly sociable and with an aptitude for maths, he was expected by his primary school to do well - academically and personally.
But Ben was stricken in February last year with a debilitating condition later diagnosed as myalgic encephalomyelitis (ME). At times barely able to negotiate the stairs to his bedroom, Ben will spend this autumn much as he spent the last one - feeling ill all the time, aching and constantly in some degree of pain. It is unthinkable that he should embark on the cut and thrust of secondary school life.
ME is on the increase and children of secondary school age are particularly vulnerable. Research published earlier this year found that ME was the single biggest cause (51 per cent) of long-term sickness absence in children. ME sufferers comprise 6 per cent of about 8,000 children in the UK who receive home tutoring. But few children with ME are getting the home teaching they require, according to a new study to be published this week by the charity, Action for ME.
The survey of home tutors in 70 local education authorities shows that only one-quarter have received information about the illness from their local education authorities or other bodies; most have to rely on what the children's parents tell them.
The lack of expertise among home tutors is worrying because ME can affect the brain even more than the body, says Jane Colby, a former headteacher who is being funded by Children in Need to be child services development officer for Action for ME. She has had ME herself and says that what she calls the f-word - fatigue - does not sum up the illness. "There's a big misconception that ME equals fatigue," she says. "The neurological dysfunction, including cognitive deficit, is just as bad, often worse, than any bodily fatigue."
Ben Broke-Smith uses different terminology but knows exactly what she means. He says his brain is like a computer that is prone to crashes.
But the keen and energetic home tutor he had for the first year of his illness didn't fully understand this. He pushed Ben to keep working, to make the most of the three one-hour sessions he had with him each week. Sometimes, after a particular ly gruelling session, Ben's legs would no longer hold him up.
"I talked to the tutor about the need for breaks and small amounts at a time," says his mother, Valerie. "Ben says his brain turns to jelly when he's concentrated for too long. He can feel it coming and needs to stop. After that, it blocks. He can't bring anything in or out. And that can provoke headaches, nausea, muscle weakness."
After complaints by his parents, Ben now has a different tutor, and temporary provision of four one-hour sessions per week. The longer term is still up in the air.
Jane Colby says that one reason for tutors' lack of understanding might be that they don't see the effects of intensive work on the child. "The child can't concentrate for long, can't understand what is being said, can't find the words to reply, can't process information. If the brain is forced to try to overcome this, it isn't always obvious to the teacher what the result has been, since in ME there is typically a time-lag between the effort and the body's reaction to it."
According to the Action for ME survey, many tutors have modified their teaching methods to help pupils with ME. They offer shorter lessons, more breaks, practical work instead of written, simplified explanations and afternoon rather than morning sessions. (Sufferers tend to feel at their worst in the mornings.) Tutors in the survey have taught their ME pupils for almost a year on average.
ME inhabits a grey area between illness and special needs, with some local authorities offering statutory assessments and others not. But children who remain on the sick list for years can come under pressure to get back to school before they are ready.
Ben Broke-Smith has twice suffered serious relapses in his health after being encouraged to go back to school too soon. The second time, last November, he was trying a part-time time-table at his Solihull primary school with the encouragement of the home teaching service, but against the better judgment of his mother. "It was too much too soon," she says. "He had giddiness, nausea, chest pains, slurred speech. One morning he stood up from the table and just walked into a cupboard. It was clear he couldn't cope."
Lack of understanding of the condition is putting children at risk, says Mrs Broke-Smith. "The illness doesn't cure itself quickly. If education departments were more knowledgeable, they could help cure children by not trying to force them back to school." Prospects for full recovery from ME are best in the early stages of the illness.
The likelihood of contracting ME increases sharply with the onset of puberty, peaking in the mid-teens - just when pupils should be doing their GCSEs. But according to the Action for ME survey, the average amount of home tuition is only three-and-a-half hours per week.
"Most children will eventually recover from their illness and will need to develop careers," says Kerry Tolley of Action for ME. "This is made difficult when they have had to try and pass GCSEs with so little formal education."
Beth Tandy of Lewes took East Sussex County Council to the High Court after it cut her hours of tuition from five to three per week as the 15-year-old started GCSE courses in maths and English. Her initial, highly publicised victory in April was overturned this summer, when East Sussex successfully appealed against the judgment and appeared to establish the principle that home tuition can indeed be determined by local authority funding constraints, not children's needs. Beth's lawyers are preparing to take the case to the House of Lords: meanwhile, term has started with the county providing five hours' tuition per week while "undertaking a review".
Action for ME has produced a home tutors' information pack on ME and is establishing a contact network. For details of these and of a conference in Bristol on children with ME on November 11, contact PO Box 1302, Wells, Somerset BA5 1YE. Tel: 01749 670799.
The Association of Youth with ME has produced an educational pack, What Do You Know About ME? for students and teachers. Details from PO Box 605, Milton Keynes, MK6 3EX