Clinical trials for UK medical cannabis could be a step closer thanks to family's campaign
Billy Caldwell's medical cannabis was confiscated at Heathrow Airport and since then his mum has been campaigning to it to be made available on the NHS
Jilly Beattie
Billy Caldwell with mum Charlotte in June last year (Image: PA)
Clinical trials for the use of medical cannabis in the UK could be drawing closer thanks to the campaigning of the family of an epileptic boy.
Billy Caldwell, 13, used a Canadian cannabis-based medicine to manage his condition, but it was confiscated at Heathrow Airport last year.
Over the last year his mum Charlotte Caldwell has been campaigning to get medical cannabis made available on the NHS, Belfast Live reports.
And now a meeting with a childhood epilepsy expert at Great Ormond Street Hospital seems to have brought her goal a step closer.
Professor Helen Cross reportedly acknowledged that the cannabis was helping Billy.
And Charlotte says talks are under way about setting up clinical trials in the UK this year.
Charlotte from Castlederg, Co Tyrone , said: "From our consultation with Prof Cross I can see very clearly that she and her team want to gain the evidence for optimal use of the right products through clinical trials. We are hoping we can now move this forward together.
Billy and Charlotte in June last year (Image: PA)
"Billy has proved that it works for him and thankfully he is doing very well.
"A planned UK clinical trial means other children could be given the chance to see if medicinal cannabis works for them.
"The end result we hope is NHS prescriptions for this amazing plant-based medicine and no need for private and expensive prescriptions."
With around 40 types of seizures associated with epilepsy, a single medicine is unlikely to be effective for them all.
Now the move towards trials of the medication means leading medical experts in the UK will examine a large number of cannabis products so they can gather evidence to show which medicinal cannabis products react well with various types of epilepsy and seizures.
And the hoped-for result is that medicines derived from the cannabis plant would be prescribed through the NHS for children with epilepsy.
A change in the law
Last July Home Secretary Sajid Javid reacted to Billy Caldwell's plight and promised to reschedule medicinal cannabis.
He said: "Today, the Government is laying the Misuse of Drugs Regulations 2018 in the House.
"These regulations reschedule cannabis-based products for medicinal use and will come into force on 1 November 2018.
"The provisions will apply to England, Wales and Scotland. My officials continue to engage closely with the Department for Health in Northern Ireland, which intends to mirror these legislative amendments."
But the rescheduling has not made it easier to get access to medicinal cannabis through the NHS in the UK where expertise on the medicine is scant.
Specialists says they need evidence from relevant trials to guide them in prescribing the medication to children, and no trials have yet been established.
However, they look to be on their way with the support of Prof Cross, paediatric neurologist and world authority on childhood epilepsy.
(Image: MDM)
Charlotte said: "It looks like I may be very, very close to getting an NHS prescription for Billy thanks to the absolutely brilliant Professor Helen Cross at Great Ormond Street Hospital.
"Billy and I had a private consultation on Thursday with Prof Cross who is a consultant paediatric neurologist at Great Ormond Street Hospital.
"She acknowledged the benefits medicinal cannabis appeared to give to Billy, and will be talking further with Billy's local team in Northern Ireland about providing an NHS prescription for medicinal cannabis.
"We had a very positive three hour consultation with Prof Cross during which she explained that because Billy had been on medicinal cannabis for two-and-a-half years, the clinical need could be justified.
"This was the first time she had consulted with a child who has had access to medicinal cannabis for two and a half years and that is recognised as Pharmaceutical Standard - and that's what has made the difference we had been searching for.
"So what's going to happen now is that Prof Cross going to speak to Billy's local medical team in Northern Ireland and advise that with her help and supervision, they should support an NHS prescription."
'Hold on tight wee man, we're nearly there.'
The breakthrough meeting in London has not just given hope to Charlotte and Billy, but appears to have opened the door to trialling the medicine for other children in the UK.
Charlotte explained: "It's clear from our conversation that Prof Cross and her team want to escalate activity in gaining the evidence for optional use of the right medicinal cannabis product through clinical trials - and together we hope now to move this forward.
"I can't believe that myself and Billy have had to endure what we have over the last number of years and battle with Belfast Trust for Billy's right to an NHS prescription.
"I said several times last year at crucial stages in our campaign that this was the first day of the rest of our lives. But they turned out to be false starts.
"However after Prof Cross's incredibly positive approach and pronouncement, I believe I can finally say it's within days of being a reality.
"I cannot find the words to express my relief and heartfelt thanks to Helen Cross and I'm looking forward to moving clinical trials forward together.
"This is really important because we simply don't have the money to pay approximately £1,000 a month for a private prescription, but it's also really, really important we have our local Trust on our side.
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"We're not over the line yet, but I'm more confident than ever before that our journey is about to move into a very happy phase. On Thursday for the first time in 13 years I came out of a hospital and felt I no longer had to be fighting to get Billy what he needs.
"I was really emotional with lots of tears and I'm sure the people who saw me assumed something really bad had happened - but it was good news, the best news.
"I grabbed Billy's hand tightly, the tears were blinding me but we just kept walking and I told Billy: 'Hold on tight wee man, we're nearly there.'
"It has taken hours to get my head around this because I've spent so long waking up every morning knowing I've a fight for Billy's life ahead of me each day. I know every other parent who has a child with epilepsy will understand that feeling.
"The last year has been difficult but finally we have stepped into good news and the prospect not only of getting NHS prescriptions for Billy, but getting the trials up and running and a more positive future for children like Billy."
A spokesperson for Great Ormond Street Hospital for Children NHS Foundation Trust said: "We can confirm that Billy Caldwell came to GOSH for a second opinion with Professor Helen Cross who is a leading expert in childhood epilepsy.
"She will be discussing the case with his local team who have primary clinical responsibility for his care while efforts continue to develop a robust evidence base around the use of cannabis for medicinal purposes."