A mother is set to bring medical cannabis into Britain illegally in a bid to help her severely epileptic daughter.
Campaigner Emma Appleby will fly to the UK from Holland on Saturday morning with her partner Lee, carrying a supply of medical cannabis for nine-year-old Teagan.
Teagan, from Aylesham near Dover, suffers from a rare chromosomal disorder called Isodicentric 15 as well as Lennox-Gastaut syndrome, which causes up to 300 seizures a day.
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” and in “patients where there is a clinical need which cannot be met by a licensed medicine and where established treatment options have been exhausted”.
The health secretary, Matt Hancock, told 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”.
Appleby, who has met Hancock, said she had no choice but to seek medical cannabis outside the UK.
She said: “We have tried a succession of pharmaceutical drugs and diets to try and help Teagan.
“But they either haven’t helped at all or have plateaued. All the drugs we’ve taken so far have severe side effects.
“I have been passed from pillar to post in my attempts to secure a prescription for medical cannabis here in the UK.
“Caring for a child as ill as Teagan is a relentless 24/7 emotionally-draining task.
“It seems unforgivably cruel that I have now had to face the added burden of raising money to go abroad to access a medicine that is legal here.
“Whilst the NHS and the medical professions are having arguments over what constitutes evidence, my child is suffering every day. I am at my wits’ end.”
She said Hancock had told her something has to change, but she added: “It hasn’t.”
Appleby raised more than £2,000 to make the journey to Holland and pay for medical fees.
Tory MP Sir Mike Penning, co-chair of an all-party parliamentary group on medicinal cannabis, said: “The law was changed for a reason in November last year precisely to help in cases such as this.
“Having met Emma and the other families, I know that they have tried everything possible to help their children.
“To see them pushed to these desperate measures is heartbreaking.
“The Department of Health, the NHS and the medical professionals should be coming together to help, not putting obstacle after obstacle in their way.
“Emma and the parents like her are totally devoted to their children. They are inspirational.
“Whilst the law is worthy of the utmost respect, it shouldn’t be used to block a mother’s love. I stand with Emma and the other parents.”
Labour co-chair Tonia Antoniazzi MP said: “That a mother of such a sick child as this has been driven to take these desperate measures is a damning indictment of how this policy has been implemented.
“The government did the right thing in changing the law. But everyone involved with the implementation should hang their heads in shame.”
Peter Carroll, director of the campaign group End Our Pain, said: “This situation defies common sense.
“I renew our appeal to the Secretary of State to intervene and help these families.
“Surely it cannot be beyond the combined wit of the Department of Health and the NHS to find a solution?”
Carroll said the Home Office had been approached for an import licence on compassionate grounds to help Teagan but this had been refused.
Appleby’s MP, Conservative Charlie Elphicke, has been pushing the Home Office to grant a licence for cannabis oil treatment for Teagan.
A government spokesman said: “We took swift action to help those who can benefit from cannabis-based medicinal products and specialist doctors are now able to prescribe cannabis-based products for medicinal use to patients who have an unmet need and where there is evidence of benefit.
“The decision to prescribe cannabis-based products for medicinal use is a clinical decision for specialist hospital doctors, made with patients and their families, taking into account clinical guidance, which is based on the best international evidence.
“It is unlawful to import unlicensed cannabis-based products for medicinal use to the UK without the prescription of a specialist doctor and a Home Office importation licence.
“These products can be imported using appropriately licensed pharmaceutical wholesalers.”