Parents’ fury as Harlow schoolboy with chronic fatigue syndrome is denied home tuition | Harlow Star | 4 April 2013

From the Harlow Star, 4 April 2013 (story by Chris Moss).

THE parents of a Harlow schoolboy suffering from chronic fatigue syndrome claim their son is being “denied an education” because of his illness.

Ten-year-old Luke Hannibal’s condition means he is often too tired to attend Potter Street Primary School – but local education authority Essex County Council have so far refused to provide him with home tuition support.

Parents Jacky and John Hannibal, of Potters Field, say they are “disgusted” by the authority’s stance, and are now worried their son has fallen so far behind with his work that he will never catch up with the rest of his class.

“Neither the school nor the county council seem to believe that Luke is genuinely ill, even though they’ve been provided with letters from his doctors,” mum Jacky told the Star.

“Their attitude is that Luke is just being lazy – and that we’re letting him get away with it.

“But the reality is that he has a very serious illness, and desperately needs home schooling.”

Luke’s problems began back in January 2011 when he was struck down with severe gastro-oesophagal reflux disease.

Following treatment, his parents noticed that he was becoming increasingly lethargic, and some days struggled to get out of bed at all.

Unable to establish the root cause of his tiredness, the family’s GP referred Luke to a consultant paediatrician, who identified a number of minor immune deficiencies and wrote to the school to inform staff Luke would be forced to take time off.

Further tests suggested Luke could be suffering from chronic fatigue syndrome – sometimes referred to as ME – which causes persistent exhaustion that is not alleviated by sleep or rest.

He began treatment for the condition in September last year, and gradually reached the point where he was able to attend school for one-and-a-half days per week.

But he has since struggled to improve further – and now mum Jacky fears the school will exclude him because of his poor attendance record.

“One of the problems with this illness is that when he has a good day he can seem quite alert and active, but the very next day he might not be able to get out of bed,” Jshe explained.

“The school won’t accept this because they don’t understand his condition.

“We think the school now wants to exclude him beacause of the amount of time he’s had off, but there’s no way I’m going to put my child’s health at risk by sending him in when he’s so ill.

She added: “We’ve pleaded for help with home tuition, but neither the school nor the county council seem to want to help us.

“He is effectively being denied an education – and we don’t know what to do”

A spokesman for ECC declined to comment on Luke’s individual case, but suggested he would be given help if the school was provided with more “medical evidence”.

“Referrals to the Children’s Support Service must be supported by medical evidence which demonstrates that the pupil is medically unable to attend school,” he added.

“In cases such as these we work with the school to support them in ensuring that the pupil concerned is able to access education.”

A study conducted in 2011 found that CFS could be ten times more common than previously thought and was a major cause of school absence across the UK.

As many as one in 100 children are believed to suffer from the condition, which currently has no cure.

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