'We have to try': Cannabis oil prescription could change life of 16-year-old Northampton boy - if he can get it
A Northampton family is asking for 'just the chance' to see what difference medical cannabis could make to the life of their epileptic son.
Julie Young, from Brixworth, is joining the families of 16 children next week to lobby Parliament on the NHS' tight restrictions to cannabis oil - which was legalised in November but so far has only been prescribed to one child in four months.
Now, she wants to know why her son Lloyd has been turned down from even trying the treatment when it could be the answer they're looking for.
Lloyd Young suffered his first seizure on his 13th birthday when his family found him blue in the face and unresponsive in his chair.
Now 16, Lloyd has tried seven different drugs and is on up to 30 tablets a day to control his epilepsy, for which doctors have never found a cause.
Julie said: "I sleep next to my son at nights. Once you have seen your child stop breathing face down in bed you know you have to be by their side to protect them. It's the most vulnerable time.
"He is nonverbal and has severe learning difficulties so cannot communicate his feelings and is very scared."
But the cocktail of drugs Lloyd is on has never outright stopped his condition.
Julie said: "The side effects include a non-existent appetite. He's lost two stone under his current drugs. And he's so tired he's practically a zombie. He is in bed shattered by 6pm most nights.
"He's still a child. To have a child on so many drugs is as damaging as having a hundred seizures a day."
Now, Julie and her family want to try their son on cannabis oil because it might cut down the medicines he is on.
Julie said: "We've got to try. It might not even work. But when will it become an option?"
But although cannabis oil was legalised in November, it is still unlicensed.
This means under NHS guidelines, cannabis oil will only be prescribed if a patient has a need that 'can't be met' by all other licensed medicines.
Meanwhile, critics say cannabis oil has still not been thoroughly studied to see what the long-term effects are.
For Lloyd, this means his doctors must try him on every drug available before he will be considered - a process that could take years.
This week, the families of other severely ill children will head to Parliament on March 19 to lobby MPs to loosen the grip on the treatment as part of the End Our Pain campaign.
It will coincide with an inquiry by the Health and Social Care Select Committee on the access to the treatment, which Julie and the other parents will give evidence at.
End Our Pain campaigner Peter Carroll said: "These are families with severely ill children. It's unforgivably cruel that they have had their hopes raised and now dashed."