Families still paying thousands for medicinal cannabis two years after legalisation

Parents of severely epileptic children continue to spend thousands every month on medical cannabis oil, despite it being available from the NHS since 2018.

The health service has only given out three prescriptions in two years, despite many more families reporting ‘life changing’ effects from the treatment.

Parents have been forced to rely on inheritance money, help from family, and donations from the public to fund private prescriptions, with some forced to make difficult decisions such as selling their homes.

They say it is the only medicine that gives their children a decent quality of life, having tried countless pharmaceutical drugs which produce side effects and often don’t help.

The Government declared medical cannabis legal in November 2018 after years of campaigning by the mother of Billy Caldwell, 14, from County Tyrone, Northern Ireland.

However, doctors are still reluctant to prescribe full extract cannabis oil – which doesn’t get children high due to its high CBD and low THC ratio – as medical chiefs say more research is needed before they can advise mass prescriptions.

But parents who are constantly up at night dealing with their children’s seizures and administering pharmaceuticals ask why their needs are less important than the three families who have been fortunate to get NHS prescriptions.

Hannah Deacon, founder of Maple Tree medical cannabis consultants, is one of the few to secure one for her nine-year-old son Alfie Dingley and is fighting for other families to have the same privilege.

She told Metro.co.uk: ‘When the law changed I was so happy because I thought children like Alfie, who are very sick, who have tried all the drugs but have no hope, will be able to use this.

‘He’s now six month seizure free, we’ve never seen him so well. He’s developing, he’s happy.

‘It’s amazing, his life has changed completely and our lives have changed and that’s why I now feel very strongly that it’s my job to campaign on behalf of other people to get access to this medicine.

‘The NHS is very much free to prescribe but it’s being blocked by all this fear-mongering about THC (the main psychoactive component of cannabis).

‘It confuses me when benzodiazepines are prescribed to babies who have epilepsy which are very serious, dangerous drugs, and yet they are not happy to prescribe a botanical medicine.’

Hannah explains how CBD, another component of cannabis, acts as an anti-psychotic, which means that in combination with a low THC content, children taking full extract medical cannabis oils do not feel any psychoactive effect.

She added: ‘People are worried about THC but CBD is an anti-psychotic. I’ve seen my child very high on pharmaceuticals, high as a kite. He’s never been high on cannabis.

‘Private prescriptions are now being issued to families. They’re having to find thousands of pounds to fund these prescriptions, and that is unfair considering the other things they’re having to deal with on a daily basis as well.’

Only consultants are currently able to prescribe cannabis oil, and Hannah says they rarely would have the time to undergo weekly reviews for at least the first three months, as is required with patients.

She says GPs should be trained on how the medicine works and given the green-light to prescribe it, especially seeing as they are the first port of call for families in need.

Hannah, 41, from Kenilworth, Warwickshire, says the fact the UK is the biggest exporter of medical cannabis in the world, yet few Britons can get hold of it, ‘makes people so very angry’.

She added: ‘There’s just this complete block in the NHS because NICE (National Institute for Health and Care Excellence) say there’s not enough clinical evidence of safety, but the problem is they’re looking at it as a single compound pharmaceutical, they’re not looking at it as a botanical medicine. We ask that NICE look at it as a botanical and change their framework.

‘What I would like to see is medical students trained in the endocannabinoid system or botanical medicine. It’s a problem – you’re asking doctors to prescribe something they have no understanding of, which they shouldn’t be doing really.

‘We were kind of ticking boxes, we were going down the list trying different drugs, and many of them you don’t want to try because they’re not designed for his type of seizure, and the side-effect profiles on them aren’t great either.’

But Charlie’s life turned around drastically when his family managed to get a private prescription from a neurologist in London for Bedrolite and Bedica – whole plant extract products from the Netherlands.

Matt said: ‘It’s almost like we switched a button and he came alive and started interacting, giggling and talking again.

‘All of a sudden we started seeing the seizures dropping off, he had days where he was completely seizure free. But on the whole, for the past year that we’ve used it, he’s had an 85% reduction in seizures.’

After having an EEG (recording of brain activity) in October, a paedeatric consultant and neurologist in Norwich found ‘a significant reduction in epileptic activity’.

But when Matt asked if they could then get an NHS prescription, he says he was told ‘we would if we could’, and when he wrote to the head of Cambridge’s Addenbrooke’s Hospital to ask why not, he was referred to NICE’s guidelines.

Since then the family has secured legal aid for a landmark High Court challenge against the guidance, which sets out prescribing guidelines for the NHS.

The family have since been offered a CBD extract called Epidiolex, but they turned it down as it has a high risk of side effects and is used alongside anti-epileptic Clobazam, which they are trying to wean Charlie off.

Matt added: ‘Ultimately, why should we have to change to a less effective product and risk what we’ve already achieved?’

‘We’ve spoken to Matt Hancock numerous times with End Our Pain, he’s even been advised that he can fund these prescriptions legally if he wanted to, he can write the cheque. It’s been done for many instances of cancer treatment and things like that, but his team are saying they can’t do that.

‘All of our children’s lives matter, not just the selected few.

‘The fact of the matter is, you can’t give one child it and not another. Their lives matter equally. We get given life care plans instead of an NHS prescription for cannabis when we’ve proved that it’s working for our children, it’s an utter disgrace, the Government needs to hang their heads in shame over this.

‘Our children have tried every drug there is, there’s nothing left to try, the hundreds of seizures that they’re going to have every day is going to damage their brains and they’re going to die.’

A NICE spokesperson told Metro.co.uk its guidelines recommend nabilone as an add-on treatment for adults with chemotherapy-induced nausea and vomiting which hasn’t responded to conventional medicines.

The public body doesn’t make any recommendations for unlicensed cannabis-based medicines for severe treatment-resistant epilepsy.

‘As with any unlicensed medicines or “specials” (unlicensed medicines that are manufactured or procured specifically to meet the special clinical needs of an individual patient), the prescribing of such products must be on a “named patient” basis.

‘Separately in 2019 NICE also recommended the only licensed product in the UK, Epidyolex, for the treatment of seizures associated with 2 types of childhood epilepsy; Dravet syndrome.’

A Department of Health and Social Care spokesperson said: ‘We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is rightly one for clinicians to make.

‘Since the law changed, 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. This follows clear evidence of their safety, clinical and cost effectiveness.

‘However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.’