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UK: Mother of girl with epilepsy has supply of medical cannabis confiscated Mattha Busby The Guardian Saturday 06 Apr 2019 The mother of a severely epileptic nine-year-old girl has had an illegal supply of medical cannabis confiscated by customs officials after she attempted to enter the UK with the potentially life-saving medication that her daughter cannot access, despite changes in the law. Campaigner Emma Appleby flew to the UK from Holland on Saturday morning with her partner Lee carrying three months’ worth of cannabis oil, valued at £4,500, for her daughter Teagan, who has a rare chromosomal disorder as well as Lennox-Gastaut syndrome, which causes up to 300 seizures a day. It follows a similar course of action by Charlotte Caldwell last year whose audacious attempt to challenge what she said were the UK’s unjust laws helped pressure the government into legalising medical cannabis. She had the medicine returned within a week after her son Billy’s seizures returned and he was admitted to hospital. Appleby, from Aylesham near Dover, said she had been “passed from pillar to post” attempting to secure access to the appropriate medicine for her child, prompting her to break the law after she had a request refused for an import licence on compassionate grounds. “We have tried a succession of pharmaceutical drugs and diets to try and help Teagan,” she said on Friday. “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.” She added: “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.” Appleby has met the health secretary, Matt Hancock, who told her at a meeting in Westminster in March that he understood the frustration and pain among families and recognised something has to change, but he conceded things need to be clinician-led. 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, with the Royal College of Physicians and the British Paediatric Neurological Association largely discouraging use of the medicine. 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”. Hannah Deacon, a campaigner for pressure group End Our Pain and mother of Alfie Dingley, one of the first children to be prescribed medical cannabis, said: “Vulnerable people are having to raise money to go abroad and they need help from the government, rather than an insistence on randomised control trials to prove the efficacy of medical cannabis. “These are not appropriate for cannabis, a plant with around 400 components. We need observational trials and modern thinking from clinicians and ministers to make these life-changing medicines truly accessible. Our children do not have five years to wait for change to slowly take effect.” The Labour MP Tonia Antoniazzi, the co-chair of the all-party parliamentary group on medical cannabis under prescription, 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.” A government spokesman said: “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.” https://www.theguardian.com/society/2019/apr/06/mother-of-epileptic-girl-teagan-emma-appleby-has-supply-of-medical-cannabis-confiscated
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