Mum of treatment-resistant epileptic says ‘we pay £1k a month to keep daughter alive’

As a new study finds whole-plant cannabis dramatically reduces seizure frequency in children with severe treatment-resistant epilepsy, parents are asking why it still isn’t prescribed on the NHS, despite medical cannabis being legalized in 2018

Watching your child as they have hundreds of seizures and wondering every morning if this could be their last sounds like every parent’s worst nightmare.

But this was very much a reality for mum Emily Howis. Her three-year-old daughter Clover is among up to 40% of epileptic children who don’t respond to conventional pharmaceutical drugs.

Clover began having hundreds of seizures a week at just three months old and was diagnosed with Aicardi syndrome, a rare genetic condition.

She was put on heavy-duty steroids that caused adrenal insufficiency and stopped her body fighting even the smallest infection.

Her day trips were all to A&E rather than playgrounds, her future uncertain.

“It was terrifying,” says bookkeeper Emily, 37, who lives with Clover and husband Spencer, a landscape gardener, in Trowbridge, Wiltshire.

Clover has had fewer seizures since starting the cannabis oil

“You spend every day thinking your child will die. We were in and out of hospital all the time. It was awful.”

Everything changed for Clover when, in 2020, she received a private prescription for “whole plant” cannabis oil, which contains the full cannabinoid, terpene and flavonoid profile extracted from cannabis flowers, including psychoactive THC.

“The results have been incredible,” says Emily. “Clover now has only one or two seizures a week and sometimes goes up to 10 days with none at all.

She can play normally and I can return to work. It has been life changing.”

Along with 20 other children also taking whole plant cannabis oil for severe epilepsy, Clover was enrolled in a study in 2020 carried out by the non-profit independent research body Drug Science.

The findings from the two-year study, announced at a House of Lords medical cannabis conference last month, revealed an 86% reduction in seizure frequency, with three children in the group entirely free from seizures, thanks to the oil.

This astonishing result far surpasses that of any other epileptic drug available.

While many of those carry serious side effects, the main risks of using cannabis have been identified as building up tolerance, fatigue and diarrhea.

Children do not get “high” from the medicine.

The cannabis study, led by Professor David Nutt, a neuropsychopharmacologist – which looks into the effects of drugs on the brain – also indicated a 96% likelihood of patients with severe treatment-resistant epilepsy responding positively.

Rayyan Zafar, who worked on the trial, says: “These children are severely unwell, often having hundreds of seizures a day, which causes serious developmental delays.

“We saw a huge improvement in overall quality of life.

“The children were able to rehabilitate back into their daily routine – return to school.”

Additionally, they were able to reduce an average of eight pharmaceutical anti-epileptic drugs to just one after using the oil.

These remarkable results bolster the growing body of evidence on the effectiveness and safety of whole plant medical cannabis treatment, with 4,000 industry-funded studies currently underway in the UK alone.

Matt Hughes with four-year-old son Charlie

Professor Nutt says: “Medical cannabis is probably the most important advance in medicine in recent years, because of its safety and wide applicability to many different disorders.

“It’s often found to be more effective than other medicines, offering superior pain control and helping to significantly reduce the use of opioid painkillers among patients.”

Despite its legalization in 2018, only three children have been given prescriptions for Clover’s life-changing whole plant oil on the NHS.

All other patients have to fund their treatment themselves, at an average cost of £874 per month.

As a result, many families are having to sell their homes, take out loans and crowdfund to keep their children alive.

“We have to pay £1,000 a month for the privilege,” says Emily, who fundraises via JustGiving and relies on friends and family to contribute to Clover’s medication fees.

“I don’t understand how this could be considered safe and effective for three children, but not for others.”

Yet experts believe the oil would ultimately save the NHS money.

“You could introduce cannabis treatment at no additional cost,” says neurologist and medical cannabis expert Professor Mike Barnes.

“Widening NHS access to cannabis would reduce hospital stays, medicines, nursing time, physio, ICU costs and opioids, for starters.”

There are many barriers that stand in the way.

These include a lack of training for doctors on cannabis as a medicine, a lack of framework for prescribing and funding and a shortage of randomized control trials.

A spokesperson for NICE says: “Until there is clear evidence of the safety and effectiveness of cannabis-based medicinal products, specialist doctors need to consider individual patient circumstances, clinical condition and need, and weigh up with the patient or carer relative risks and benefits in choosing treatments.”

Matt Hughes, dad to four-year-old Charlie and founder of patient support group MedCan, pays £500 a month for his son’s prescription.

Charlie was diagnosed with West Syndrome, an epileptic condition that causes him to suffer up to 100 spasms per day, when he was 10 weeks old.

IT manager Matt, 42, says it’s devastating to know his little boy’s health is entirely dependent on the family’s financial situation.

“We’ve had to sell our home to afford Charlie’s prescription, which he needs to survive,” says Matt, from Norwich.

“He’s finally stable thanks to cannabis, but we don’t know how we’ll pay for it long term.

“Families are fighting every day to keep their children alive.

“We need this to be available on the NHS now.”

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