Matt Hughes sees Britain’s medical cannabis blockade as the start of a race.
In this race, however, the clinicians and hospital bosses assembled behind the line are not poised to come flying out of the blocks.
Instead they are looking anxiously at their peers waiting to see who will cross the line first that they can chase into the unknown.
Matt and his wife have the biggest possible stake in how this plays out.
Their two-year-old son Charlie has a rare epileptic condition called West syndrome. His life has been transformed by medical cannabis, but the family has been unable to secure it on the NHS, hence a forthcoming court battle and the ongoing financial burden of an expensive private prescription.
Matt says: “As soon as one hospital trust or clinician prescribes, we’re hearing that the flood gates could open. At the moment it’s a question of who’s got the balls to step over the line and make the first prescription?
“They’re all looking at one another, looking for other NHS clinicians that have prescribed.”
Before they discovered cannabis medicine last May, Charlie was having up to 120 seizures a day and was on a regime of four anti-epileptic drugs at any one time.
Now taking cannabis medicine, his seizures are down to 10 to 20-per day and his development is gathering pace. The family followed the ‘start low, go slow’ approach to cannabis medicine, gradually finding the right product and quantity to best manage his condition – and he is in a much better situation now than when he took various anti-epileptic drugs.
“Beforehand, he was either sleeping or, when he was awake, he was just seizing. He wasn’t interacting and you couldn’t really play with him. There was no giggling or little baby noises. It was almost as if we didn’t really know our child, if that makes sense.
“Now, he’s like a different kid. All of a sudden he’s laughing, giggling, interacting and developing. He has speech therapy, physio and is at nursery and the specialists he sees are all saying his development is moving on.”
This change, while priceless to the family, comes at a hefty financial cost of around £1200 per month. Having been denied access to his treatment on the NHS, the family is taking NICE and Cambridge University Trust to court in what could be a landmark case.
“This isn’t just about Charlie, it’s about all children with these conditions being able to access medical cannabis. If they did give us a prescription, we hope it would encourage other people to stand up to the trusts and also it could help trusts to feel more confident in prescribing.”
On 1st November 2018 the government moved “cannabis based medicinal products” from Schedule 1 to Schedule 2 of the Misuse of Drugs Regulations 2001.
This enabled doctors on the specialist register to prescribe cannabis. The regulation change allowed for prescriptions for any condition and of any product meeting good quality production standards (EU Good Manufacturing Practice).
Unfortunately, since that point there has been no prescription of a full extract cannabis product on the NHS.
There are a number of speculated reasons for this. Partly there is a perceived lack of support and training around cannabis medicine for doctors, with the endocannabinoid system and cannabis plant rarely taught in medical school.
Also, although not relevant to epilepsy patients specifically, guidelines produced by influential bodies the Royal College of Physicians and NICE are largely negative about cannabis as a pain relief treatment.
Furthermore, an NHS doctor willing to prescribe cannabis needs to gain approval from their trust. But no trust has taken the bold step of agreeing to prescribe.
There is also the added complication that, save for the products Epidyolex and Sativex, cannabis medicine is an unlicensed treatment which means that the prescribing doctor takes more responsibility and liability than usual.
Matt says: “When the law changed, two children that had special licences received prescriptions. But Charlie’s would be the first NHS prescription since the law changed so in that regard it would be a landmark case.”
Cambridge University Hospital NHS Foundation Trust, which guides other local trusts on epilepsy issues, says that guidelines from NICE prevent it from prescribing medical cannabis. But NICE claims it does not prevent doctors making prescriptions where clinically appropriate.
“So our argument is asking whether this is a clinical decision or is it just a ‘no’. Personally, I think the trust appears to be giving us a blanket ‘no’ rather than looking at the individual case. Despite what the law says about clinical decisions, there is no clinical decision being made.
“I’ve spoken to clinicians that say they would prescribe if they could but I think there is a feeling that if they step out of line, their trust will block it anyway.
“Also, a lot of clinicians are prescribing it privately, just not on the NHS. So why is it fine for children to take it privately but for the NHS we need all this extra evidence?
“At the same time, no-one in the NHS is saying this drug is dangerous. At no point, since Charlie’s been on it, has anyone said it’s dangerous and he shouldn’t be on it.”
The family is taking considerable risk in pursuing legal action.
While they have received some legal aid, they would be liable for the legal costs of NICE and the trust, which Matt estimates could be upwards of £20,000.
Over £11lk has been donated to the family via the legal fundraising platform Crowd Justice to help them in the battle ahead.
Lawyer Nusrat Zar, of Herbert Smith Freehills, stated in the Mirror newspaper that the aim of the case is to “ask the court to rule that the refusal to offer the drug is unlawful”.
She explained: “Legally, a decision doesn’t oblige the hospital to give the drug. But public bodies like the NHS are good in taking on board such decisions.”
At the time of writing no court date has been set, with COVID-19 continuing to cause havoc to all such processes.
In the meantime, Matt and his wife are supporting other parents in navigating their own access to medical cannabis.
“We understand the processes and laws now and pass everything on to other families about what we’ve learned in fighting to get the medicine.”
Donate to the Hughes family and read their full story here.
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