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.
‘They should be rolling out education to doctors on the endocannabinoid system, which is an overarching receptor system in your whole body.’
Other products derived from cannabis which contain CBD but are not full-plant extracts, are more readily available on the NHS, and do provide some benefit to children with severe epilepsy.
After getting hold of a CBD oil product called Charlotte’s Web for his three-year-old son Charlie, Matt Hughes, 41, from Norwich, said it made him more alert but had hardly any effect on his daily seizures.
The family started looking into alternatives after trying seven anti-epileptics, a ketogenic diet, steroids and benzodiazepines, which he will probably be dependent on for the rest of his life.
Matt added: ‘Charlie was just miserable, all he was doing was sleeping, if he wasn’t sleeping he was seizing. And the drugs just kind of dumb you down, so there was just no quality of life.
‘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?’
For now, Charlie’s parents have no choice but to pay £600 a month for their son’s medicinal cannabis, through a combination of help from friends and family, inheritance money and fundraising, despite events being cut back ever since the coronavirus pandemic.
However, other families have had to pay thousands every month, including Elaine Levy, from Hertfordshire, who sold her four bedroom home earlier this year to cover the £2,000 monthly cost for her daughter.
Rachel Rankmore, 44, from Cardiff, says her son Bailey, now 19, suffered multiple seizures a day from two years old, regularly being rushed to hospital and having his body shut down ‘with an obscene amount of drugs’.
She added: ‘It was really harrowing to think, “It’s out of our control, there’s nothing we can do.” The doctors said to us there are no drugs left to try.
‘We knew he was going down a slippery slope, he was in hospital every week, loaded up with drugs every fortnight, so we were looking into alternative treatments.
‘We slept in with him for the last 16 years of his life to make sure he doesn’t die in his sleep. So you research.’
Rachel found success stories about Charlotte’s Web, manufactured in Colorado, and decided to visit a stockist in Kent to see what difference it made.
She said: ‘Within days we saw our Bailey coming back, it was immense. He became alert, he was talking, he stopped wearing his crash helmet and ran up and down the corridors. Teachers were looking at him in shock, thinking, “Oh my God, Bailey’s running.”
‘We were out front, washing our car, and Bailey kept dragging his scooter through the hallway. He hadn’t been on it for years.
‘But he wanted to go out and play with the kids. He was chatting with all the children who were saying “what’s Bailey doing out? He never comes out to play.” And that was the moment we just thought wow, this has given him a chance to be a normal child.
‘But unfortunately, Charlotte’s Webb is only a hemp oil, it wasn’t the full extract cannabis oil, and two years later he did go downhill again. He just reached tolerance with it.
‘The seizures were really disabling him, he was in a wheelchair, his hands were crooking in, he was drooling. The drugs they were giving him, benzodiazepines, were being swapped in and out every day.
‘He came out of school shaking, he just looked like a druggy. It was heart wrenching to see that happening before our eyes and thinking, “this is going to be his life now, he’s going to die from a seizure if we let him carry on.”‘
Rachel was inspired to join the fight to legalise full plant medicinal cannabis, got in touch with Hannah, and is now part of the End Our Pain campaign group.
Bailey, now 19, has had ‘massive improvements’ since finding a prescription for cannabis oil from a private neurologist, costing his family £1,300 per month with the help of fundraisers.
Rachel says her son’s NHS neurologist won’t prescribe cannabis oil because they ‘don’t know the product’ and because there’s ‘no framework in place’.
She added: ‘Well there is a framework because three prescriptions have been written in the UK.
‘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.
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However the body does ‘acknowledge the need for more research to build the evidence base for the use of these medicines, and supports NHS England and NHS Improvement’s call to collect evidence from both randomised controlled trials and observational studies’.
The spokesperson added: ‘The guideline committee recognised that there is currently very little good quality evidence regarding the use of cannabis-based medicinal products for treating severe epilepsy. The committee therefore made recommendations for further research in this area.
‘It’s also important to point out that even had NICE recommended widespread use of these products, it would not necessarily mean that they would become routinely available on the NHS.
‘This is because the majority of the products are unlicensed and so access will only be available from specialist doctors, supported by local governance systems, and adhering to General Medical Council guidelines of prescribing.
‘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.’
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