A mum who is fighting for her disabled sons to be given medicinal cannabis on the NHS has told how other parents of sick kids are smuggling it in from The Netherlands.
Two of Angela Norton's three sons have a rare form of epilepsy called West syndrome, which can cause them to have multiple seizures every single day.
Their seizures can be so severe that Angela, who lives in Macclesfield, often goes to bed not knowing if her boys will still be there in the morning.
Both Reims, 19, and Cayman, 12, have been prescribed conventional medications for many years, but nothing has brought their seizures under control.
But when Cayman's health deteriorated last year, Angela convinced medics to give him a medicinal cannabis drug called Epidiolex, which contains the cannabis ingredient CBD.
It initially brought his seizures under control, before it eventually stopped working.
Now Angela is desperate for Manchester University NHS Foundation Trust to agree to prescribe her sons full-plant based medicinal cannabis to help with their seizures.
Her ongoing battle to obtain the drug legally for her sons will be featured on the BBC's Inside Out North West on Monday.
Angela told the programme: "Reims was four weeks old when we first noticed his seizures.
"He ended up on a life support machine.
"From about four months on the seizures were significant and at six months old he was diagnosed with West syndrome, which is a rare form of epilepsy.
"When we had Reims he was genetically tested and obviously nothing came back and we were told it was probably just a one off mutation, so we had Harry who was fine.
"We had no reason to believe it was going to happen again.”
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Angela had a third son, Cayman, and within months she suspected there was something wrong.
“I knew something wasn’t right from a very early age. I was told I was paranoid and obviously in the end the seizures were confirmed.”
A change in the law last year gave parents like Angela hope when the Government amended the Misuse of Drugs Act to allow the use of medicinal cannabis for specific health conditions, including intractable epilepsy.
"The evidence that we have seen in other children that are taking it are having completely seizure free or very few seizures a month," said Angela.
"The impact on the care that the boys would need in the home, it would just change everything.
"We go to bed at night not knowing if they are going to be there in the morning.
"That is the reality of it.
"Every seizure is dangerous, every seizure causes damage; there’s just no quality of life for the boys at all.”
But, 11 months on from the change in the law allowing consultants to prescribe medicinal cannabis, Angela still can’t get the full plant-based medicinal cannabis her sons need.
Angela has raised £6,000 through fundraising and obtained a private prescription, but with each one costing nearly £2,000 it would only last three months.
"I know obviously they do need to do the trials but these children are really, really sick," added Angela.
"They've got no other options and you know they can’t spend their lives in hospital not knowing what to do.
"They can’t wait for the trials, they won’t be here. You know every seizure could be fatal, we haven’t got the time.”
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Highlighting the desperation felt by other people in her position, she said: "What other families are doing is they are literally going out to Holland and bringing it in illegally."
A spokesperson for the Department of Health and Social Care said: “There is a clear consensus on the need for more clinical evidence.
"The decision to prescribe must remain a clinical one, made with patients and their families, taking into account the best available international evidence, the potential risks and benefits and individual circumstances.”
A spokesperson from Manchester University NHS Foundation Trust said: “Expert clinicians work very closely with pharmacy teams to ensure the most appropriate and effective treatments are provided to patients.
"Our teams continue to support the patient and their family to ensure they are given the most appropriate treatment and care.”
BBC Inside Out North West goes out on BBC One (North West) on Monday, September 23 at 7.30pm and is also available to watch on iPlayer.
