Mum of four-year-old with severe epilepsy says she still has ‘no choice’ but to break the law
PUBLISHED: 12:22 02 November 2018 | UPDATED: 12:22 02 November 2018
Although from today, medicinal cannabis products can now be legally prescribed to some patients in the UK for the first time, one Suffolk mum claims she will still have to commit a crime to get her daughter’s life-changing cannabis medicine.
Four year-old Indie-Rose Clarry, from Clare, near Sudbury, has Dravet syndrome – a severely disabling form of epilepsy which leaves her at times unable to walk or chew her food.
Little Indie has endured eight anti-epileptic drugs with no response in reducing her seizures, but the family have seen progress with Bedrolite, which contains chemicals produced by the cannabis plant.
Although the medical cannabis laws have been relaxed today, Indie’s 29 year-old mum, Tannine Montgomery, says its “terrible news”, because the new NHS guidelines state that patients should be weaned off Bedrolite to go onto Epidiolex, a medicine produced by GW Pharmaceuticals.
Ironically, the cannabis harvested to make Epidiolex is grown in Wissington, just a 20 minute drive from little Indie-Rose’s home.
“I will still be breaking the law and travelling to Holland to get Indie’s medicine - I have no choice as a mother,” she says. “Its a very disturbing situation to be in.”
Ms Montgomery claims that before going onto Bedrolite, Indie was experiencing 40-hour long bouts of insomnia and would lie on the floor, “distressed and body-rocking.”
“The stress and worry were indescribable,” she said. “Indie has experienced 60% less seizures and her insomnia has gone since she has been on Bedrolite.
“I know that it is a safe product, because it’s made by the Dutch government.
“I am not going to wean my daughter off her medication for a drug that was only trialled for three months. I believe this could be dangerous, and could have more severe side effects.
“We are currently using a medicine that is effective, and has been shown to be safe, and that’s very important. Unfortunately Epidiolex is a completely different product, it’s not a whole plant extract.”
Ms Montgomery says she will be travelling again to Holland when her current supply of Indie-Rose’s medicine runs out to get more.
“We have 40 days left of medication - that’s all we can afford, because it’s very expensive.
“So far, we spent £17,000 on the medication and travel expenses. We live in a council house, we’re just normal people so its a lot of money for us.
“Its disgusting. But I am trying to keep a brave face on for Indie.”
Ms Montgomery explained that she is still in contact with MPs to bring the issue to the Home Office’s attention.
“I’m sure the Home Secretary Sajid Javid will be upset to hear that children are still suffering,” she added.
Chris Tovey, chief operating officer of GW Pharmaceuticals, says that his company has spent the last 20 years undertaking “pioneering scientific investigations and extensive clinical trials” with a view to helping seriously ill patients with clear unmet need.
“We welcome the focus on this important area of medicine and the government’s reforms, and hope this will encourage increasing levels of research and clinical trials in the UK,” he added.