On Tuesday 12th June 2018, a delegation of patients and campaigners from United Patients Alliance attended a Press Conference for Charlotte Caldwell who’s fight to bring her son, Billy, age 12 with intractable epilepsy, his effective cannabis medicine into the UK has been so prominent in all areas of media since her story was broken on Sunday by Mail on Sunday editor, Ian Birrell:
Charlotte and Billy travelled to Canada last Thursday to get a prescription and buy the medication she says is keeping her son alive but had it confiscated by British customs officials upon her return to Heathrow Airport on Monday morning leaving poor Billy without his potentially life saving treatment.
The conference was attended by two Conservative MPs, Dr Dan Poulter, who is co-chair of a new All Party Parliamentary Group (APPG) for Medical Cannabis and Crispin Blunt who co-chairs the APPG for Drug Policy Reform along with several more parents with children who suffer from similar conditions to Billy.
Steve Moore, Director of Volteface; a policy innovation hub that explores alternatives to current public policies relating to drugs, introduced the session by announcing the launch of a new campaign, Families 4 Access in support of families who need access to medicinal cannabis for their children explaining how much more effective a persuader the plight of a large group is to a government than that of an individual.
Charlotte told us that Billy had had his first seizure in 300 days on Monday night after being without his medicine. Thankfully, his seizure was a mild one and whilst unsurprisingly very tired, he was otherwise well. She was, however, concerned that his 100 per day seizures would return if he didn’t get his anti-epileptic medicine back today. She added that at her meeting, yesterday with Minister for State and Policing, Nick Hurd, he refused to approve the return of Billy’s life saving medication because it was a Schedule 1 substance and illegal to possess without an appropriate license. He recommended she apply to the Health Department in Northern Ireland as medical licensing was a devolved matter.
Charlotte passionately expressed her support for the #Families4Access campaign stating that this issue was not just about Billy or any other single case but was a critical concern for 100s, maybe 1000s of parents in the UK with similarly sick children.
Dr Poulter then told us about his APPG for Medical Cannabis:
"The current law is ridiculous; there is growing evidence that cannabis products used medically can be helpful in treating a number of conditions, but yet it is still seen through the prism of illegality here in the UK"
He said that his new initiative would be a common sense and medically not politically led investigation by qualified doctors who served as MPs and hopes to have a working policy recommendation for the Government in around 12 to 18 months allowing for time to analyse and include the legal changes that would be required.
Whilst cautioning about rushing through quick policy changes he recognised that the current licensing system for medicines such as in Billy’s case was patently inappropriate and would be looking to propose improvements rather sooner:
"the Home Office could act very quickly to help families on an individual basis by relaxing its ridiculous licensing restrictions”
Crispin Blunt then added his own condemnation of the Home Office’s lack of a compassionate response to Billy’s situation:
“It is inconceivable that the Home Office continues to deny the medicines that Alfie and countless other patients so desperately need yet can access in many other countries including Canada, the United States and several EU states.
“A simple statutory instrument in Parliament will allow families out of the current absurd position of having to either expatriate themselves, or obtain cannabis illegally and face a prison sentence for caring for their own.”
There was a strong sense of progress and hope in the room as the conference closed. With the knowledge of an APPG for Medical Cannabis, the impassioned support of two senior Conservative MPs and a new campaign to drive public and political support we feel that this hope extends to all the estimated 1.1m medical cannabis patients in the UK.
Though the thought that it has taken the suffering of a number of children to bring us this hope is rather sobering and we can only hope that Billy and all of #billysbuddies get access to the treatments they need and deserve without further delay.
To Billy, Jorja, Eddie, other Eddie, Reuben, Murray and the rest of #billysbuddies - We thank them all for showing the world how beautiful they all are despite their suffering.
Please sign up and give #families4access your support!
Jon Liebling - Political Director