MP takes up narcolepsy boy's case

Ben Foy with his mother Lindsey

Ben Foy with his mother Lindsey

First published in News
Last updated
York Press: Photograph of the Author by

THE case of a York boy who developed narcolepsy after having the swine flu jab has been brought up in Parliament as his family say he is the victim of a “bureaucratic nightmare”.

Ben Foy, eight, from Strensall, suddenly falls asleep up to 20 times a day and often collapses suddenly as a result of narcolepsy and cataplexy believed to have been brought on by the jab. His condition is very disruptive to his daily life.

His family say his situation is made worse as he is not able to get the medicine he needs.

Although Ben’s doctor has recommended that a drug called sodium oxybate could significantly help, confusion over conflicting guidelines mean his case has been passed back and forth between different commissioning authorities for the last year.

The case has now been raised in Parliament by York Outer MP Julian Sturdy, who was told by Health Secretary Jeremy Hunt, they needed to direct any questions to NHS England - a contradiction to what the family previously been told.

Brian Hamilton, Ben’s grandfather, said: “The argument is about how the system works.

“This is an eight-year-old boy who is being passed around from pillar to post. For six months we have been passed around from one department to the other just trying to get answers.”

Unless Ben can have sodium oxybate - which would treat all of his symptoms - he faces taking a less effective cocktail of sleeping pills, antidepressants and stimulants, Mr Hamilton said.

Ben’s doctor was restricted to whether she could give Ben sodium oxybate due to new NHS guidelines. When she recommended it, the drug was twice refused by a funding panel.

Despite NHS England telling them it was a matter for York’s clinical commissioning group to deal with, health secretary Jeremy Hunt last week said it was a matter for NHS England and offered to set up a meeting.

He also suggested the drug was not suitable for children, which is confusing, Mr Sturdy’s office said, as other children in the country have been prescribed it.

Mr Sturdy said: “Ben and his family have been passed from pillar to post for a long time now and understandably they are fed up with the whole process.

“Unfortunately there still exists some confusion between our different health bodies over who has responsibility for what and in my opinion the Government absolutely must provide greater clarity if our health services are to work for the people who need them. I will continue working in Parliament to achieve this aim, not just for Ben and his family but for the many others who may be affected.”

- The Foy family is waiting to hear whether Ben - and others affected by the jab - are likely to receive compensatory damages.

Swine flu vaccine Pandemrix was given to almost a million British children in 2009 to 2010. The NHS says the risks of narcolepsy are extremely low. The drug is no longer used and the NHS had already decided not to prescribe it for those under 20.

Comments (1)

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4:23pm Tue 18 Mar 14

Digeorge says...

I have every sympathy in dealing with this NIGHTMARE Commissioning Group!

I think they deserve the "Job's Worth" award for incompetency and I don't think they known 'how the system works' anymore!
I have every sympathy in dealing with this NIGHTMARE Commissioning Group! I think they deserve the "Job's Worth" award for incompetency and I don't think they known 'how the system works' anymore! Digeorge
  • Score: 3

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