Family ‘desperate’ for medicinal cannabis to treat 6-year-old’s severe epilepsy
- Credit: GILES BRYANT
The mother of a young girl who suffers from a rare form of epilepsy is calling for increased availability of medicinal cannabis on the NHS after revealing her daughter’s struggles without the drug during the Covid-19 lockdown.
The law was changed in 2018 to allow specialist doctors to prescribe cannabis-based medicines where appropriate.
But the drug is still not readily available on the NHS, meaning that Tannine Montgomery has had to have medicinal cannabis prescribed by a private doctor in the Netherlands for his daughter Indie-Rose Clarry - who has Dravet Syndrome, a severe form of epilepsy.
With the family not able to get hold of the drug during the coronavirus lockdown, Indie-Rose’s health has taken a turn for the worse.
Relatives have sent petitions to health secretary Matt Hancock - but are now organising a walk on Sunday to raise awareness about the benefits of medicinal cannabis.
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A Department of Health and Social Care spokesperson said: “We sympathise with those patients dealing so courageously with challenging conditions.
“Two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate.
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“This follows clear demonstrated evidence of their safety, clinical and cost effectiveness. We have also changed how we regulate imports to improve supply and reduce costs.
“We continue to work with the health system, industry and researchers to improve the evidence base and identify what more we can do to minimise the cost of these medicines for patients, NHS or private.”
Ms Montgomery, said: “We have tried to make the oil last as long as we could, but unfortunately Indie doesn’t have any of the medicinal cannabis left and subsequently she is having a lot of seizures and is going to have to require hospital treatment.
“It’s been scary to know we would run out of the medication at some point and I’m actually quite shocked how quickly she has gone downhill since she hasn’t had it. We are desperate to have it back as soon as possible.
“If it was granted by the NHS, she would have it now just through the normal route.
“I think that’s really poignant. It is wrong in this day and age.”
Giles Bryant, co-organiser of the walk, said: “We are walking on Suffolk Day, on the summer solstice and it is Father’s Day too.
“My message to all fathers is this – imagine your child was sick and in danger of dying from a seizure at any time.
“I call on all people to show solidarity with Indie’s family, and millions of people who could benefit from this natural medicine.”
Walkers are due to meet at 10am in Bury St Edmunds Abbey.
They will be observing government Covid-19 guidelines to make sure everyone walking is safe. The group aims to return to Clare around 5pm.