It costs just £36 a bottle and the family of Charlie Jones believe it could save his life.
But Charlie’s grandfather has said his family simply can’t wait the “months” it could take for them to get cannabis oil to treat the six-year-old’s daily seizures.
Charlie suffers with Non-Ketotic Hyperglycinemia (NKH) – a very rare genetic disorder which leads to abnormally high levels of a molecule called glycine and causes serious health problems.
The condition affects his organs and brain and, for example, it means he has seizures every day.
Grandfather Ian Gilmore, from the Killay area of Swansea , said that, for years, he had been trying to get Charlie cannabis oil as he thought it might reduce the number of seizures he had.
He has around 70 to 80 seizures a day – including cluster seizures, when he can have up to 30 of in five minutes.
When he has these, they need to take Charlie to hospital. This has already happened three times this year.
Mr Gilmore said their licence application to be able to treat Charlie with cannabis oil was currently with their consultant and that, if they were not willing to fill it in, they would have to go to another consultant, and the process could take months.
Mr Gilmore said: “He could die and all for a £36 bottle of medicine.
“I think they are letting us down. It could take months [to get a licence].
“The cluster seizures are getting more frequent, and that is why we need the cannabis oil urgently.
“We worry that he might die – every day is a bonus.”
He said that if they couldn’t win approval to get the cannabis oil, they would have to take alternative measures.
“If we can’t find one, I will go to a laboratory in Amsterdam and buy some cannabis oil,” he added.
“I am frustrated.”
He said applying for the cannabis oil was complex.
“It is bureaucracy. It is an 11 page application. It should be a one page application with a few questions.”
Mr Gilmore said he didn’t want the NHS to pay for the cannabis oil – he was happy to meet the cost himself.
Mr Gilmore said he first contacted the Home Office in 2014, but that nobody there gave him any information. It is only two months ago that they found out they needed a consultant to fill in the licence application.
He felt families should be allowed to try using cannabis oil to treat seizures. In Charlie’s case, he needs oil containing cannabidiol (CBD).
While recreational users of cannabis seek out the high they receive from tetrahydrocannabinol, or THC – which is the dominant active ingredient in skunk plants – most medical oils are extracted from hemp plants and contain mostly cannabidiol.
Tonia Antoniazzi, MP for Gower , has been supporting the family through the process.
She said they were trying for it to be as easy as possible for doctors to give prescriptions out for children that needed medicinal cannabis.
“The Home Office has been less than forthcoming and we are trying to push them,” she said.
“We are trying to advertise the fact that doctors are able to apply for these licences.
“It is a real urgent situation for these families. They need access to this medicine for their children to stay out of hospital and for them to be able to live rich, fulfilling lives.
“It is really important that the Home Office sorts this out.”
Across the UK, there are parents desperate to be allowed to see if cannabis oil can help their children.
Their plight has been highlighted by the publicity surrounding epileptic 12-year-old Billy Caldwell who had to be admitted to hospital after his medical cannabis was confiscated.
After being granted a rare 20-day licence to use the treatment, his seizures subsided and he was released from hospital .
In response to growing pressure, Home Secretary Sajid Javid has announced a review of the medicinal use of cannabis.
A Home Office spokesman said: “We completely sympathise with the families who have been facing desperate situations as they try to find treatment.
“That is why the Government has taken action, creating an expert panel to review individual medicinal cannabis licence applications.”
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