Six months after the government legalised the use of medical cannabis not a single patient has been prescribed the drug on the NHS, according to campaigners.
They say thousands of people have been forced to break the law to treat their symptoms.
Even Billy Caldwell, the 12-year-old boy whose case prompted reform of medicinal cannabis laws, has been unable to secure an NHS prescription. He is one of about 50 people who have instead managed to obtain cannabis medicines via a private prescription.
In October last year, the government changed the law so that 80,000 specialist doctors could legally prescribe cannabis-based medicines but not a single prescription has been written out for the substance.
The public are not taking their families health into their own hands & purchasing from outside the country & risking possible jail time taking it back.
Emma Appleby received the supply of cannabis oils for nine-year-old daughter Teagan, who suffers up to 300 seizures a day, from the Government on Friday.
Border Force seized the items, which cost £4,600, as campaigner Mrs Appleby and her partner Lee landed at Southend Airport in Essex on Saturday after visiting the Netherlands.
The family, from Aylesham near Dover, had flown out on Thursday and had the medicine prescribed by a paediatric neurologist in Rotterdam.
But, after it was seized, they had to obtain a prescription from a specialist UK consultant.
Mrs Appleby said: “This has been one of the most stressful weeks of my life, and life caring for a child with intractable epilepsy is plenty stressful enough.
“We only went to Holland out of sheer desperation.
“We’d fought for months to get access to medical cannabis in this country but were blocked at every turn even though it’s now legal here.
“But overjoyed as I am, my heart goes out to those other families with severely epileptic children who are in the depths of despair.
“Neither I, nor they, should be put through this bureaucratic trauma. The system just isn’t working.”
Teagan suffers from rare chromosomal disorder Isodicentric 15 as well as Lennox-Gastaut syndrome, a severe case of epilepsy.
Health Secretary Matt Hancock tweeted on Friday: “Happy to say that Teagan Appleby’s cannabis-based medicine has arrived and is ready to be collected.
“We are working hard across government to ensure we get these medicines to those who need them.”
The law in the UK was changed last November to make access to medical cannabis legal but parents have been struggling to secure prescriptions, in part due to reluctance within the medical community.
NHS England guidance says it expects that cannabis-based products for medicinal use should “only be prescribed for indications where there is clear published evidence of benefit” & in “patients where there is a clinical need which cannot be met by a licensed medicine and where established treatment options have been exhausted”.
Mr Hancock said in the Commons last month that his “heart goes out” to parents experiencing anguish over difficulties in obtaining medicinal cannabis.
He said he is working to “unblock” some of the challenges in the system but, ultimately, “these things need to be clinician-led”.
Mrs Appleby added she wanted Mr Hancock to “follow through on his recent supportive words and unblock the system”.
She said: “Those with the power to sort this need to, and fast.”