Ben Foy, 8, denied drugs for narcolepsy
A PRIMARY school pupil who started to suddenly fall asleep or collapse after having the swine flu jab has been refused medication for his condition.
Eight-year-old Ben Foy – who can fall asleep up to 20 times a day and often collapses without warning – has been diagnosed with the sleep disorder narcolepsy and with cataplexy, but he must wait for a panel to rule on his case.
His family believe his conditions were triggered by the swine flu jab Pandemrix, which was given to hundreds of thousands of children and which research suggests has resulted in an increased risk of narcolepsy.
But despite being told Ben could initially have the drugs modifinal and sodium oxybate to manage his symptoms, the first has been stopped on medical grounds and the family has recently been told the NHS can no longer fund sodium oxybate due to conflicting commissioning guidelines.
It was yesterday announced his case will go before a medical panel on Monday to determine whether Ben may be allowed the medicine on an individual basis.
Brian Hamilton, Ben’s grandfather, said: “It’s very frustrating, we are locked in bureaucracy.
“If there’s one thing you don’t want to hear doctors say in this situation is, ‘our hands are tied’.
“It makes our life harder and we feel Ben is suffering for no reason. If he can’t get the medication he is not going to have the same chance as the lad next door. He needs this medicine for him to keep up with the kids at school.
“If there is anything he needs – as someone who may not be able to drive or do manual jobs due to his condition – it’s his education. but he won’t get it if he can’t get his grades at school. The condition is a particularly distressing condition for both patient and family to endure. Funding is available, the drugs are available and children are suffering because of adult behaviour.”
The narcolpesy means Ben regularly falls asleep and he often collapses due to cataplexy - a sudden loss of strength which once caused the Robert Wilkinson Primary School pupil to nearly collapse in a road and temporarily give up playing football. Ben’s temperament has also been affected, his family said.
His mum, Lindsey Foy, said: “When he was younger we used to call him the little Peter Kay, he was very funny and happy. Now he has really changed and he can be bad tempered.”
Sodium oxybate – which is not licensed for use in children and has to be judged individually – is a medicine which is used in treating cataplexy associated with narcolepsy.
A spokesman on behalf of the Vale of York Clinical Commissioning Group confirmed that Ben’s case would be considered by a funding panel in York on Monday.
Mr Hamilton wrote to York Outer MP Julian Sturdy, who said he would await the decision of Monday and would take the issue further on Ben's behalf if necessary. Mr Sturdy said: “It's an awful situation. The fact he can’t get this treatment is very worrying and concerning for the family.”
Swine flu vaccine Pandemrix was given to almost a million British children in 2009 to 2010.
The Government-funded study confirmed findings of previous research from Finland.
The NHS said in a statement: “It is important to point out that the risk of narcolepsy – where a person suddenly falls asleep at inappropriate times – is thought to be extremely low.
“The researchers estimate that the chance of developing narcolepsy after receiving a dose of the vaccine is somewhere between one in 52,000 and one in 52,750.
“Due to the results of previous studies, Pandemrix is no longer given to those under 20.”
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