- Video report by ITV News Health Correspondent Emily Morgan
Families of children with severe epilepsy have handed a petition with about 578,000 signatures to Downing Street calling for the guidance on prescribing medical cannabis to be reviewed.
The petition, organised by the End our Pain campaign, argues that patients and their families are being denied NHS prescriptions for medical cannabis because the professional guidance is too restrictive.
It is supported by Hannah Deacon, whose son Alfie Dingley was the first person in the UK to receive a permanent medical cannabis licence and went on to be granted the first NHS prescription issued after the UK law change.
Speaking at Parliament on Tuesday, Ms Deacon said she could not stand back and let other children suffer after seeing the “wonderful change” medical cannabis had had on Alfie.
She said that since the prescription, her seven-year-old son had gone from being in hospital 48 times in one year to just one hospital admission in a year.
Ms Deacon added: “A public health crisis is looming if these children are not helped urgently.
“All these children have tried many drugs, many interventions, and they still have seizures every single day and it’s an utter disgrace.”
And another mother, Emma Appleby, told ITV News how severe epilepsy could kill her nine-year-old daughter, Teagan.
She said: "I can't plan for the future. Epilepsy can kill her at any time ... that's the hardest thing, is knowing."
The Government announced plans to reschedule the drug earlier this year, and doctors have been able to prescribe cannabis products to patients in the UK since November 1.
The country’s chief medical officer, Professor Dame Sally Davies, said private companies should pay for trials into medical cannabis because they stand to make the profits.
But she told an influential committee of MPs that there were no shortcuts to getting the drugs to patients.
Dame Sally told the Health Select Committee on Tuesday that there needed to be a series of randomised control trials in order to get cannabis drugs licensed for use.
She said that because the private sector was set to make the most profits from the drugs being licensed, it should to fund some of the trials.
Dame Sally added: “We have a role for the public sector to fund these studies because it matters to patients.
“But we would expect the manufacturers, who are going to be making the profit at the end of the day, to be funding the licensing trials.
“That’s what’s needed – randomised control trials are the only way to get these drugs licensed.
“Those would normally be funded by the industry and I think it’s time that the industry started to say what it is going to do about funding trials to get the licence so patients can have access.”
But when asked if the process could be “streamlined” to allow patients quicker access to the products, Dame Sally said: “There is no shortcut, we have to find out how it works and what the impact is.”
But Alette Addison, head of pharmacy development and regulation at Department of Health and Social Care, told the select committee that without an evidence base doctors will not be confident prescribing the drugs.
She also denied that the current guidance was too restrictive, insisting it was based on the “best international evidence available”.
She added: “Doctors are only going to be confident in prescribing, signing that form, if they have the evidence base to do so, and it’s not there at the moment.”