Parents feel misled by ministers over medical cannabis pledge

Carly Ashton cannot get an NHS prescription or afford one privately for her daughter Esme, who has a rare form of epilepsy

A high-profile government climbdown that legalised a type of cannabis medicine on the NHS five years ago misled patients, campaigners say.

It was thought the law change would mean the unlicensed drug, which treats a range of conditions, could be freely prescribed by specialist doctors.

But fewer than five NHS patients have been given the medicine, leaving others to either pay privately or miss out.

The government says safety needs to be proven before a wider rollout.

Legalisation of whole-cannabis medicine was hailed as a breakthrough for patients - giving either NHS or private specialist doctors the option to prescribe it if they believed their patients would benefit.

Medical whole cannabis uses the entire cannabis plant - which includes the compound THC, the part which can make people feel high.

But patients are being turned away, say campaigners, because doctors often do not know about the medicine, which is not on NHS trusts' approved lists. Some specialists who do know about it say there is insufficient evidence of the drug's safety and benefits to support prescribing.

The drug would need to undergo medical trials before it could be officially licensed - but these are costly and complicated because of the many chemical compounds within the cannabis plant. Campaigners say trials of medicines containing whole plant cannabis, particularly with the aim of helping children, would be unethical as some patients would have to come off essential medication to take a placebo.

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The BBC has been told that when specialist doctors do want to prescribe the unlicensed products, there is no simple way to get funding.

They have to ask NHS England to make an exception to pay for individual cases, but they are almost always turned down. It is known that fewer than five have been approved.

Licensed cannabis drugs do exist for specific conditions - but they do not use the whole plant. For example one called Epidiolex contains another cannabis compound - CBD. It can be prescribed for epilepsy but does not benefit patients across the spectrum of epilepsy disorders.

'I felt like I changed history'

Hannah Deacon, pictured with son Alfie, spearheaded the campaign for legislation change

The first patient to receive an NHS prescription for medical cannabis was 11-year-old Alfie Dingley, who has severe epilepsy.

His mother, Hannah Deacon, from Kenilworth in Warwickshire, successfully spearheaded the high-profile campaign which led to the 2018 legislation change.

Before then, Alfie travelled to the Netherlands where whole-plant cannabis oil is legal under prescription for medical purposes.

Following Hannah's campaign, Alfie's GP was granted a licence to prescribe it under direction by a specialist doctor, in a process called a shared care agreement.

Alfie's mother believes the treatment has been life-changing - he has not had a seizure for three years. He gets 13 bottles of Bedrolite on an NHS prescription each month. The cost would otherwise be £225 per bottle.

Hannah says back in 2018, she felt like she had changed history, opening up the treatment to people with a wide range of debilitating conditions including chronic pain, insomnia and neurological conditions like Tourettes.

But now, she feels she only got the drug on the NHS because she made a huge fuss in the media.

"I think they changed the law to take the wind out of my sails because the campaign was very effective," she says.

'Parents clamouring'

Dr David McCormick says ministers "shifted the heat" to practitioners like him

Senior paediatric consultant Dr David McCormick, from King's College Hospital in London, says it was "disingenuous" of the government to suggest in 2018 that NHS prescribing was ready to take place.

Ministers "shifted the heat" to practitioners like him, he says.

"Parents were clamouring at our door, or phoning all the time, as they believed we were able to prescribe and that was not the case.

"The message went out, 'doctors can now prescribe cannabis products' and that put us in a difficult position, because in truth we need to apply for that to be approved by NHS England."

£1,600 for a six-week supply

Pre-2018, the only way patients could get hold of cannabis products and use them medicinally was to buy them illegally in the UK, or to travel abroad to get them. Now, if the NHS will not pay, they can legally pay for private prescriptions from specialist clinics.

There are now 31 private prescribing centres across the UK. These clinics issued more than 140,000 prescriptions between November 2018 and 2022.

It is estimated that the medical cannabis market will be worth £1bn in 2024.

Jasper's parents say the effectiveness of whole-cannabis oil is "just jaw-dropping"

One private patient is 13-year-old Jasper Salisbury-Jones, from Brixton in south London, who - like Alfie Dingley - has a rare form of epilepsy.

"By the time he was 11, he was having about 800 seizures a day, which sounds ridiculous but that was where we got to," says Jasper's mum, Alice Jones. "The doctors did say we were out of options, so the expectation was that eventually a seizure would kill him."

Jasper had tried nine different other medicines, had brain surgery, and an electrical implant was put in his chest - but nothing would stop his fits.

Then he tried medical cannabis oil and his mother says his seizures, which once dominated his life, now only occur every few days.

"It's just jaw-dropping," Alice says. "For this medication to do this is incredible."

Jasper has been unable to get medical cannabis on the NHS. His parents now pay a private clinic £1,600 for a six-week supply. That cost is likely to increase as Jasper gets older and bigger.

The couple are using their savings to pay for the medication and Alice no longer pays into her private pension. While they say it is financially very difficult, she knows they are lucky.

"We're not choosing between this and another medication or a form of treatment, we're choosing between this and watching my son slowly slip into mental disability and then probably paralysis and death," she explains.

'Esme's being denied'

Esme is being treated with 15 different drugs and spends much of her time sedated

But one parent who cannot get an NHS prescription - or afford to pay for one privately - is Carly Ashton, an ex-social worker from Christchurch in Dorset.

Her two-and-a-half-year-old daughter Esme has an extremely rare form of epilepsy that affects fewer than 700 children worldwide. Esme has been treated with 15 different drugs and currently spends much of her life sedated.

Carly has been warned that if her condition is not brought under control, Esme could die suddenly from a seizure.

"Ultimately they could become more violent, they could cause broken bones, multiple hospital admissions, it could cause her to die in her sleep," she explains.

She finds the situation very unfair, knowing there are children with the same condition who say they are benefitting from taking a form of medical whole cannabis.

"They are almost seizure-free or [entirely] seizure-free. It's given their life back. Esme's being denied that opportunity," she says.

Alfie takes the medicine in the form of an oil

Hannah Deacon says she is heartbroken that legislation she fought for has not led to the hoped-for change.

"I find it shocking that the government has literally just washed their hands of this problem," she says.

The Department of Health and Social Care (DHSC) said in a statement: "Licensed cannabis-based medicines can be funded by the NHS where there is clear evidence of their quality, safety and effectiveness.

"It is important to carefully review evidence on unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll out on the NHS more widely."

The government also adds that if a funding request for this medicine is not approved by an independent panel of experts, it cannot intervene in that decision.

An NHS spokesperson said: "While there is limited evidence on the safety of these unlicensed products, we continue to encourage manufacturers of these products to engage with the UK medicines regulator, which would provide doctors with the confidence to use the products in the same way they use other licensed medicines."

In Scotland, health boards would make the decision on whether to fund a specialist's request for a prescription.

NHS Wales said: "Where an NHS healthcare professional wishes to prescribe these products arrangements are in place for the NHS to consider, and where appropriate, meet their cost."

Northern Ireland offers advice for NHS patients.

The National Institute for Health and Care Excellence's (NICE) guidelines state it recommended research into the use of unlicensed cannabis-based medicines for severe treatment-resistant epilepsy.

The body, which is responsible for deciding which drugs and treatments should be available to patients on the NHS, said there was insufficient evidence of the medicines' safety and effectiveness to recommend it for the whole population of people with the condition.

But it added that this should not be interpreted by doctors as meaning they were prevented from considering the medicines where clinically appropriate. It says they can be prescribed on advice of a specialist, in consultation with the patient.

Edited by Sarah Bell