There is a “serious cultural block within the NHS around medical cannabis”, according to MPs.

The criticism comes after it emerged that the family of the first child to be prescribed medical cannabis after its legalisation must pay almost £10,000 a year to access the privately prescribed medicine as they follow a bureaucratic “assault course”.

The all-party parliamentary group for medical cannabis condemned the workings of the current licensing regime, saying it cannot have been what the government envisaged when they legalised medical cannabis in November.

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“For Jorja [Emerson] and her family this is a great day and I commend the private consultant, supported by her private hospital, who has taken the courageous decision to prescribe a medical cannabis product which she genuinely feels is in the best interest of her patient,” said Mike Penning MP, co-chair of the group.

“But the fact remains that there is a serious cultural block within the NHS around medical cannabis. Other families, many with children just as seriously ill as Jorja, continue to face a complete block from their NHS medical teams.”

He said most families did not have the means to go private, and in any case “the number of even private clinicians willing to prescribe appears to be in low single figures”.

“I do not believe that this is what the prime minister and home secretary envisaged when they made the bold change in the law on 1 November to reschedule medical cannabis to enable consultants to prescribe it,” he added.

Calling for action from the highest levels of government to rectify a system that was “letting patients down”, co-chair Tonia Antoniazzi MP said: “The high-profile cases over the summer of Alfie Dingley and others clearly show that for some epileptic children medical cannabis containing low concentrations of THC [tetrahydrocannabinol] can be life-transforming.

“Denying parents the right for their children to try these newly available medicines is cruel. It appears that the medical profession is totally wedded to only prescribing a substance for which there is double-blind trial evidence. But there is a need for a common-sense perspective here.”

She added that many severely epileptic children were treated with conventional anti-epileptic drugs that had passed such trials, yet had severe side effects.

“To our knowledge, no one has ever died from taking THC, and in any case the concentrations that we are talking about in these medicines are very low,” she said.

Two-year-old Jorja has a rare form of treatment-resistant epilepsy that causes her to suffer from life-threatening seizures. She has been treated with a number of heavily sedative pharmaceutical drugs that consultants have said are causing long-lasting damaging effects.

She has been in intensive care twice in her life, once enduring a “status seizure” that lasted more than 17 hours, with doctors warning that she might die.

Her father, Robin Emerson, said: “This has been an assault course of bureaucracy and a rollercoaster ride of severe ups and downs. I have faced near-total opposition in my quest to get my daughter access to a medicine that is now legal in the UK and has been shown to work in similar cases. No family should have to endure what we have been through.

“Thanks to the generosity of friends and supporters I have managed to raise enough money to fund the first few months of the medicine. But at £833.75 per month I face a desperately difficult future.”