'I’ve sold my house to pay for my daughter’s medical cannabis'

The NHS still rarely prescribes legal cannabis saying there has not been enough concrete research into the area to justify expanding what it offers, ITV News Reporter Sam Holder reports

Within two weeks of taking medical cannabis, Fallon Levy’s life was transformed.

The 30-year-old had been suffering 200 seizures a month as a result of a severe form of epilepsy.

For decades the seizures, combined with the powerful epilepsy medicine she had been prescribed, meant it was hard for her to talk, chew food and even sit in a chair.

Fallon hardly left her home and her family were constantly in fear that she would suffer potentially fatal injuries during the uncontrollable fits.

“It was really terrible”, says her mum Elaine, “I thought there was no hope”.

That was until Fallon was prescribed pharmaceutical-grade cannabis oil.

Her seizures virtually stopped and now, despite still having serious health issues, she is able to spend every day of the week doing a different one of her favourite activities.

From simple pleasures like drawing at home, to dance classes at the local Mencap centre - even going out for coffee with her mum - all things that were impossible a few years ago.

“It changed my beautiful life”, Fallon says while taking a break from watching her favourite musical clips on YouTube, on the sofa of the flat where she now lives semi-independently.

For decades Fallon's seizures, meant it was hard for her to talk, chew food and even sit in a chair. Credit: ITV News

Like any parent, Fallon’s mum Elaine would do anything for her daughter’s health but this almost miraculous improvement has come at a painful price for the family.

For the past six years, they’ve been paying £2,000 a month out of their own pocket for her treatment.

They’ve had to sell their home and are rapidly running out of money.

“Where am I going to end up?”, Elaine asks with tears in her eyes, “the pressure is enormous”.

Families of children with epilepsy across the UK celebrated when medical cannabis was legalised in 2018. But, for a large number of those families, the celebrations were premature.

Then Health Secretary Sajid Javid pushed for the law change after listening to parents of children with conditions just like Fallon’s.

Six years on and many of those families find themselves in the same position as the Levys - paying huge monthly sums for the treatments and with almost nothing left in the bank.

While medical cannabis can now be legally prescribed, the reality is that it’s only available for a small proportion of patients for free on the NHS.

For everybody else, the only route is expensive private prescriptions.

Hannah Deacon helped spearhead the campaign for legalisation; she was one of the most prominent voices appearing regularly on television and radio.

Even though her son Alfie, who has severe epilepsy, does get his medical cannabis on the NHS, Hannah says that she feels failed by the government.

Deacon told us: "We have 37,000 children in this country with severe intractable epilepsy, who are either in hospital costing the NHS money or at home."

"Those people deserve to have good treatments and those doctors deserve to have the support to prescribe them [with the treatments]".

"The government is there for to ensure that policies they make work and they really haven't done that".

Hannah Deacon helped spearhead the campaign for medical legalisation.

In order for a treatment to become readily available on the NHS, it has to be ‘licensed’. That means it has usually undergone rigorous testing - such as long-term randomised medical trials - and is deemed to be cost-effective.

Currently, there are only three ‘licensed’ medical cannabis products and they are only available for patients with very specific conditions, including around 20% of childhood epilepsies, chemotherapy patients suffering from nausea and people with spasms caused by multiple sclerosis.

There are far more unlicensed products, which are still legal, but it’s extremely rare for them to be prescribed by NHS doctors and involves a complicated funding process.

According to the most recent statistics since legalisation, that has happened less than five times.

So almost all patients with conditions that aren’t covered by the current NHS guidelines, including chronic pain, insomnia and other types of epilepsies, have to get treatment privately.

Although Fallon has Lennox-Gastaut syndrome, one of the childhood epilepsies which is eligible for medical cannabis on the NHS, the specific pharmaceutical-grade CBD oil she uses - Bedrolite - is an unlicensed product, so she can’t get it on a free prescription.

Fallon’s family say she suffered significant side effects from the licensed medicine approved for her condition.

The family keep appealing to the NHS for a Bedrolite prescription funded by the health service, a position supported by their local MP, Deputy Prime Minister Oliver Dowden, but their applications have been rejected every time.

Her parents know that if they stop paying the £2,000 per month for the private prescription, the seizures will almost certainly return. It’s a responsibility that weighs heavily on Elaine.

“I'm not going to be here forever and what's going to happen when I'm not here?”, she says, “no-one's going to help Fallon”.

The government says it’s taking an “evidence-based approach” to unlicensed cannabis treatments in order to ensure they are “safe and effective before they can be considered for roll out on the NHS”.

The evidence that the NHS and government want is data from long-term randomised medical trials.

Unfortunately for patients like Fallon, those studies - which often cost tens of millions of pounds - are lacking.

That's in part due to the difficulty with copyrighting cannabis, making it hard for companies to recoup the costs involved in the research.

“The reason that medical cannabis does not have as many licensed treatments is because ‘big pharma’ haven’t invested” says Mikael Sodergren, Head of the Medicinal Cannabis Research Group at Imperial College in London.

“They’ve not invested because they haven’t been able to see an easy way to protect their investments through intellectual property and patents”.

At a secret location in the West Midlands, one of the UK's legal medical cannabis farms is midway through installing equipment as part of a major expansion.

The pungent smell from the specially developed strains of cannabis, using state-of-the-art technology and all grown up to exacting pharmaceutical standards, is overwhelming.

Here they already grow nine tonnes of cannabis a year - enough to treat 50,000 people - but currently, not a single gram is available for NHS patients.

The site is approved and inspected by the government, but none of the products are currently licensed. There are farms in the same situation across the country.

Both NICE (the body which authorises which treatments should be available on the NHS) and the NHS are calling for more randomised controlled trials and observational studies in order to have the data necessary to decide on whether to approve more medicinal cannabis products.

But that process can take many years, meaning families like the Levys are likely to run out of money long before their loved one’s treatment ever becomes available on the NHS.

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know...