Desperate chronic pain and epilepsy sufferers today reveal how they risk jail by growing their own medical cannabis to stop terrifying seizures.
They speak out despite the risks as TOWIE star Amy Childs aims to persuade Boris Johnson to make the drug more widely available on the NHS as part of her campaign to help sick children who would benefit from it.
Amy, 31, wants to talk to the PM and wife Carrie “parent to parent” after being moved to tears by six-year-old Jorja Emerson’s plight.
Jorja’s dad Robin, 36, says medical cannabis oil has cut seizures that threaten to kill his daughter who has severe epilepsy caused by a rare chromosome disease.
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Since she started the drug her family say she’s gone from 30 seizures a day to barely stepping foot in hospital.
Medical cannabis is legal in the UK, thanks to tireless campaigning by Robin and other parents, but NHS demand for more trials on the drug’s safety means few get prescriptions, forcing parents to shell out £2,000 a month for private treatment.
It has left many sufferers having to go abroad to get the drug – or risk a criminal conviction by growing their own.
Reality star Amy, who launched a petition through the Sunday Mirror to make NHS cannabis more accessible, said: “Parents are paying for private prescriptions to keep their children alive as the NHS have only issued a handful. Their anxiety levels must be going through the roof.
“In these difficult times, who can find up to £2000 a month for private prescriptions? It shouldn’t be a choice parents have to face. I feel so bad for other families in this awful situation.
“It’s barbaric the lengths they have to go through just to keep their children safe. It remains illegal to import cannabis oils without a special license, so some parents are resorting to breaking the law.
“Medical cannabis needs to be available to everyone who needs it.”
Amy says she tweeted the PM about her campaign and did not receive a reply.
But she is determined to make him take notice and wants to appeal to him as a father. “I want to sit down face to face with him with Jorja and tell him about this wonderful little girl. I’d tell him how much Robin paid on Jorja’s private prescriptions before a private company had to sponsor her medication.
“When I believe in something, hand on heart I will do all I can to change things.”
Robin, of Dundonald, County Down, said many epilepsy patients are being “pushed into becoming criminals”.
He said: “There are more than 10,000 private prescriptions within the UK for medical cannabis products, yet the NHS won’t prescribe them as they say more medical trials are needed. It means drug dealers are benefiting from sick people.”
Here four people tell how they have resorted to growing their own cannabis to treat their illnesses.
Lesley Gibson, 57, from Cumbria
Gran Lesley has grown and used cannabis to help ease her multiple sclerosis for 34 years.
She was diagnosed with MS in 1984 and told she’d be incontinent and in a wheelchair in five years. She had a paralysed right side and lost her speech.
But she noticed she felt better when with husband Mark as he smoked cannabis recreationally. So she decided to grow her own, putting it in chocolate. She says it led to several court appearances including a suspended sentence – with a judge telling her to buy medical cannabis. A private prescription cost her £1,000 a month. “I was forced into debt, putting it on credit cards.”
Now Lesley’s called for an amnesty for medicinal users. “Cannabis has saved my life. It’s like a miracle. How dare anti-cannabis campaigners say I can’t have something that stops me being incontinent and in a wheelchair. I don’t take whisky and paracetamols like there is no tomorrow.
“It’s cruel to deny medicine to people.”
Philip Antony Bevington, 82, from Cornwall
Former agricultural teacher Philip has stage three kidney disease and felt forced to break the law and grow his own cannabis to alleviate his symptoms before it was made legal on prescription in the UK.
Widower Philip, who vapes the drug, was given a two-year suspended sentence for growing the drug.
He said when he found out about his diagnosis he “was determined to find a way to help myself” and began cultivating plants.
“My condition improved leaps and bounds,” said Philip. “My kidney disease readings improved, my pain went, I was eating better. I was sleeping incredibly well and I felt fine. Essentially, I went back to normal.
“Though I loved the growing side, I lived in constant fear, always expecting a visit from the police.
“I never felt guilty, I was saving my own life. I was just scared and angry the law was unable to recognise how this amazing plant was benefiting me.”
Although he now has access to a private legal prescription, Philip said the standard is “abysmal” and very expensive.
He added: “If I was presented with a similar scenario I would do it again, despite the fear and paranoia.”
John Browne, 42, from East London
Chronic pain sufferer John vapes cannabis and also eats cannabis jellies and chocolate to help relieve symptoms which have left him disabled and unable to work.
He says that after going down the “usual route of the GP” – using physiotherapy and prescription painkillers, including morphine and epilepsy drug pregabalin – he found cannabis was the best way to manage his pain. John started to grow his own when he found the strains sold by his local drug dealer weren’t working.
“I’m a dab hand at gardening, so I trialled a small grow at home,” he said.
"It’s given me some dignity back. I don’t want a cannabis prescription as I like having control over what I’m putting into my body.
"I’m well aware of the risk of coming out about my illegal activity. But I’m speaking out for every vulnerable patient who needs cannabis products, but faces penalties from archaic drug policies.
“We are patients, not criminals.”
Alison McEntee, 52, from Glasgow
Alison had a private medical cannabis prescription for multiple sclerosis, epilepsy and vision problem optic neuritis – but it cost her up to £500 a month.
She says that she will now have to choose between selling her house or growing her own cannabis in order to pay her bills.
The learning developer said: “As a single, disabled woman, the financial burden of paying such a high price to keep myself well has been extreme. I’m now at the point where I can’t pay my essential bills, especially now with the recent energy price hikes. I can’t even afford to buy food.
“Sadly, I can’t access the cannabis medication I need on the NHS, so every spare penny I have goes on my prescription. I often skip meals to save money.
“So I feel I have been left with no choice but to grow my own cannabis, which is considerably cheaper. Without cannabis, my outlook was bleak – a life on benefits with extremely poor health and no work. I was going to lose everything I had worked for. Cannabis has changed my life. I feel 25 again on good days, of which there are now an increasing number. I’m even running three times a week now – something I never imagined would be possible. I’m in full remission.”
She said the “only realistic option” she has left to keep her condition in remission is to grow her own cannabis.
“My only other option is to sell my house and use the equity to pay for my medication,” she said.“I’m simply not prepared to do that, and why should I be?”
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