Ben Foy, 8, denied drugs for narcolepsy

York Press: Eight-year-old Ben Foy, who suffers from narcolepsy, with his mum, Lindsey, at their home in Strensall Eight-year-old Ben Foy, who suffers from narcolepsy, with his mum, Lindsey, at their home in Strensall

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.”

Comments (12)

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12:00pm Sat 7 Sep 13

asd says...

Maybe Mr Sturdy should go back to his co-alition and say what his privatisation on NHS is doing. This is case is only the tip of the ice berg, profit before treatment, its kids like Ben through no fault of his own has to pay the consequences of tye co-alition trying to make a name for them selfs interfering with NHS for the worse. I hope Ben gets the treatment he deserves.
Maybe Mr Sturdy should go back to his co-alition and say what his privatisation on NHS is doing. This is case is only the tip of the ice berg, profit before treatment, its kids like Ben through no fault of his own has to pay the consequences of tye co-alition trying to make a name for them selfs interfering with NHS for the worse. I hope Ben gets the treatment he deserves. asd
  • Score: 8

3:53pm Sat 7 Sep 13

Hel n Highwater says...

Modafinil is a very expensive drug which is heavily regulated. I was told that it was being withdrawn due to it's effects with those with high blood pressure - when I asked why, then, withdraw it from those not suffering from high blood pressure, there was no answer! I strongly believe it is due to financial pressures from above (wherever "above" is) but a wrong and ineffective use of medicine across the board! I hope this lad gets the drugs he obviously needs so that he can achieve the kind of life he deserves, otherwise, what chance will he have?
Modafinil is a very expensive drug which is heavily regulated. I was told that it was being withdrawn due to it's effects with those with high blood pressure - when I asked why, then, withdraw it from those not suffering from high blood pressure, there was no answer! I strongly believe it is due to financial pressures from above (wherever "above" is) but a wrong and ineffective use of medicine across the board! I hope this lad gets the drugs he obviously needs so that he can achieve the kind of life he deserves, otherwise, what chance will he have? Hel n Highwater
  • Score: 5

7:52pm Sat 7 Sep 13

spottycow says...

HOPE lad gets what he wants
HOPE lad gets what he wants spottycow
  • Score: 6

8:20pm Sat 7 Sep 13

Dithenewbreed says...

Maybe if he was a heroin addict he would get what ever he wanted. Looking after the wrong people!
Maybe if he was a heroin addict he would get what ever he wanted. Looking after the wrong people! Dithenewbreed
  • Score: 4

8:50pm Sat 7 Sep 13

Pandemic 2013 says...

Pandemrix was a very unusual case! When a new 'flu virus apprears and goes pandemic it takes a minimum of 6 months to produce and minimally test a vaccine for it - by which time two waves of infection have passed and its market is merely as an element of the next annual 'flu vaccine! This conundrum has perplexed Big Pharma for decades - how to make a profit from a pandemic! Some clever spark came up with the concept of the 'Anti-viral' sold in bulk to gullible wined and dined civil servants with absolutely no guarantee that it will work against any new virus plus such a small window in which it must be administered that it is money in the bank and no comeback!
Pandemrix had been developed AND LICENSED as a possible H5N1 bird 'Flu vaccine and was 'in the cupboard'; some bright spark persuaded the European drug licensing agency that it was effective against the new H1N1 'Swine 'Flu' - the US FDA were not persuaded and refused to license it. The side-effect of inducing narcolepsy was of course unknown but the company should surely make sure that families effected should want for nothing out of the huge profits they made?
Curiously they were allowed to simply substitute the H1N1(2009) for the H5N1 element after six months without re-licensing it or even changing its name! And there appears to be no analysis on whether these devastating effects were a feature of the first version or the later version of Pandemrix or both. In my humble opinion governments ought to be a) leadng people and organisations etc to get ready for a pandemic by educating them about how viruses use us to infect ourselves and each other and b) developing drugs to damp down the cytokine storm effects which kill so many - anti-inflammatories. We will not stop it happening but we can minimise the damage and save our way of life by putting our knowledge of viruses to good use - our ancestors never had this knowledge and it is our greatest weapon...
Pandemrix was a very unusual case! When a new 'flu virus apprears and goes pandemic it takes a minimum of 6 months to produce and minimally test a vaccine for it - by which time two waves of infection have passed and its market is merely as an element of the next annual 'flu vaccine! This conundrum has perplexed Big Pharma for decades - how to make a profit from a pandemic! Some clever spark came up with the concept of the 'Anti-viral' sold in bulk to gullible wined and dined civil servants with absolutely no guarantee that it will work against any new virus plus such a small window in which it must be administered that it is money in the bank and no comeback! Pandemrix had been developed AND LICENSED as a possible H5N1 bird 'Flu vaccine and was 'in the cupboard'; some bright spark persuaded the European drug licensing agency that it was effective against the new H1N1 'Swine 'Flu' - the US FDA were not persuaded and refused to license it. The side-effect of inducing narcolepsy was of course unknown but the company should surely make sure that families effected should want for nothing out of the huge profits they made? Curiously they were allowed to simply substitute the H1N1(2009) for the H5N1 element after six months without re-licensing it or even changing its name! And there appears to be no analysis on whether these devastating effects were a feature of the first version or the later version of Pandemrix or both. In my humble opinion governments ought to be a) leadng people and organisations etc to get ready for a pandemic by educating them about how viruses use us to infect ourselves and each other and b) developing drugs to damp down the cytokine storm effects which kill so many - anti-inflammatories. We will not stop it happening but we can minimise the damage and save our way of life by putting our knowledge of viruses to good use - our ancestors never had this knowledge and it is our greatest weapon... Pandemic 2013
  • Score: 12

10:07am Sun 8 Sep 13

York1900 says...

This government can give millions away in aid and arms to other countries but when it come down to the People of the UK they come down the pecking order because they are funding these MPs BIG IDEAS

It is time that these MPs got there house in order and stopped spending our money in other parts of the world and spent our money on the People of the UK

Every time we have had a Tory government they have damaged the NHS by changing the rules and how it operates they all ways manage to make more jobs for managers and less front line staff and drugs
This government can give millions away in aid and arms to other countries but when it come down to the People of the UK they come down the pecking order because they are funding these MPs BIG IDEAS It is time that these MPs got there house in order and stopped spending our money in other parts of the world and spent our money on the People of the UK Every time we have had a Tory government they have damaged the NHS by changing the rules and how it operates they all ways manage to make more jobs for managers and less front line staff and drugs York1900
  • Score: 9

10:29am Sun 8 Sep 13

Digeorge says...

Wait till Monday for a decision.

Then find a lawyer who specialises in product liability.

As the drug companies make £ billions and when there is an adverse effects of a drug then they are liable.
Wait till Monday for a decision. Then find a lawyer who specialises in product liability. As the drug companies make £ billions and when there is an adverse effects of a drug then they are liable. Digeorge
  • Score: 6

6:59pm Sun 8 Sep 13

mrcharly says...

modifinal has been withdrawn from use due to medical reasons. It would be a scandal to keep prescribing it to this lad!

sodium oxybate costs £13000 per year; so quite rightly the trust is convening a panel to decide if the lad should receive it.

The scandal here is the the swine flue vaccination. “Due to the results of previous studies, Pandemrix is no longer given to those under 20.”
modifinal has been withdrawn from use due to medical reasons. It would be a scandal to keep prescribing it to this lad! sodium oxybate costs £13000 per year; so quite rightly the trust is convening a panel to decide if the lad should receive it. The scandal here is the the swine flue vaccination. “Due to the results of previous studies, Pandemrix is no longer given to those under 20.” mrcharly
  • Score: 5

3:17pm Mon 9 Sep 13

Ben boy Foy says...

Hi mrcharly
I think you have misunderstood some of the issues , we have a letter from our consultant confirming this case is in a state of LIMBO due to recent reforms in the NHS direct procedures. It is not about the cost of the treatment . We were told the trust are unable to intervene in this case . We have not been informed by anyone from the medical profession about the meeting on Monday, we were informed by Kate Liptrot the reporter before she went on holiday on Friday.
The decision to review the case would appear to to us as a result of the intervention of the press and Julian Sturdy ,
However you are correct in that there are a number of questions that need to be answered regarding the pandermix vaccine.
An earlier comment from pandemic 2013 would appear to confirm your concerns.
Many thanks for taking the time to comment , all comments are very much welcome
Kind regards
Bens Grandad
Hi mrcharly I think you have misunderstood some of the issues , we have a letter from our consultant confirming this case is in a state of LIMBO due to recent reforms in the NHS direct procedures. It is not about the cost of the treatment . We were told the trust are unable to intervene in this case . We have not been informed by anyone from the medical profession about the meeting on Monday, we were informed by Kate Liptrot the reporter before she went on holiday on Friday. The decision to review the case would appear to to us as a result of the intervention of the press and Julian Sturdy , However you are correct in that there are a number of questions that need to be answered regarding the pandermix vaccine. An earlier comment from pandemic 2013 would appear to confirm your concerns. Many thanks for taking the time to comment , all comments are very much welcome Kind regards Bens Grandad Ben boy Foy
  • Score: 0

3:21pm Mon 9 Sep 13

mrcharly says...

That sounds like a stuff-up by administration.
Reviewing the use of the sodium oxybate on a case-by-case basis is actually a standard thing to do.

I've had one child with a life-threatening condition and I have another with ME, so I do understand your feelings. The NHS is normally pretty fantastic, in my experience. Children also grow and cope pretty quickly . If Ben misses out on a couple of years of schooling now it really won't matter in the long run, particularly as he obviously has parents (and grandparents) who care.
That sounds like a stuff-up by administration. Reviewing the use of the sodium oxybate on a case-by-case basis is actually a standard thing to do. I've had one child with a life-threatening condition and I have another with ME, so I do understand your feelings. The NHS is normally pretty fantastic, in my experience. Children also grow and cope pretty quickly . If Ben misses out on a couple of years of schooling now it really won't matter in the long run, particularly as he obviously has parents (and grandparents) who care. mrcharly
  • Score: 0

6:27pm Mon 9 Sep 13

Digeorge says...

Bens Grandad

Wikipedia gives some alternative diagnoses for nacrolepsy including L-caritine disorder, it is usually quite accurate and concise! And you can buy those over-the-counter at H&B. Your GP would be able to advise. Just an alternative thought to see if those alleviate the symptoms.

If you have had your diagnosis locally, a trip up to Newcastle to see alternative specialists might be a good idea as the advice I have received has been very different on mine and wished I had gone there a very long time ago!

Good luck, frustrating as you say.
Bens Grandad Wikipedia gives some alternative diagnoses for nacrolepsy including L-caritine disorder, it is usually quite accurate and concise! And you can buy those over-the-counter at H&B. Your GP would be able to advise. Just an alternative thought to see if those alleviate the symptoms. If you have had your diagnosis locally, a trip up to Newcastle to see alternative specialists might be a good idea as the advice I have received has been very different on mine and wished I had gone there a very long time ago! Good luck, frustrating as you say. Digeorge
  • Score: 0

7:30pm Mon 9 Sep 13

Ben boy Foy says...

To pandemic 2013
Your comments are very interesting and after some research it would appear that Glaxo Smith Kline would not release the pandermix vaccine unless the governments requesting the vaccine signed a indemnity releasing them from any liability from any possible side affects of the vaccine ( I wonder why ? )
You appear to well informed , any help would be very much appreciated
Brian
To pandemic 2013 Your comments are very interesting and after some research it would appear that Glaxo Smith Kline would not release the pandermix vaccine unless the governments requesting the vaccine signed a indemnity releasing them from any liability from any possible side affects of the vaccine ( I wonder why ? ) You appear to well informed , any help would be very much appreciated Brian Ben boy Foy
  • Score: 0

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