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UK: Let my boy have cannabis to control his epileptic fits Jaymi McCann Express Sunday 02 Sep 2018 He has been on a range of medications with some having side effects but nothing has worked. His mother Emma, 34, says she wants him to be able to try epidiolex, a form of cannabidiol – the plant’s extract – which has a low level of THC, the main mindaltering ingredient. Some other children in the UK have been prescribed the drug since the Home Office changed the rules in July. Oscar’s only option is an operation to insert in his chest a Vagus Nerve Stimulator, a device used to treat seizures when drugs are not effective. Emma says they have been stalled in their attempts to get epidiolex because each neurologist they see is reluctant to prescribe the medication. Emma, of Bradford, said: “Oscar is suffering all the time. He has hundreds of seizures every day, his communication abilities have been affected and he has temper tantrums like a three-year-old. “It is incredibly stressful and upsetting for him and us. “I am trying to get epidiolex and have been trying since July. Part of the difficulty is that he is now on his fifth neurologist and we have not been able to get anyone to start the process to give him the treatment he needs. “In May, Great Ormond Street Hospital said he could get a VNS implant, which would be inserted into his chest and wired around the nerve in his neck. “But this would only reduce his seizures, not cure him, and it comes with all the risks that any surgery has. It is also possible that he wouldn’t see any improvements for as long as two years.” She added: “We want to be able to try cannabis before going down this route. There are families across the UK who still haven’t been able to get a referral. The system isn’t fi t for purpose.” After a series of high-profile cases the Government announced that a temporary panel of experts would be accepting applications for cannabis licences from senior doctors from July this year. The panel will make “swift” recommendations to ministers, who will then sign off applications within two to four weeks, according to the Home Office. Doctors will have to show there is an “exceptional clinical need”, but Ms Smith believes neurologists are reluctant. “It is really frustrating for families,” she said. “Neurologists don’t want to apply to the panel for anything that has THC in it. They don’t want to touch it. “I’ve spoken to mothers in other parts of the UK whose doctors have told them they would only consider applying for it if their child was in intensive care. But can you blame them? They’ve been asked to take full responsibility for it when they haven’t been trained in it. “The Home Office needs to go back and look at the process.” Emma, who left her job as a learning disability nurse to care for Oscar, has campaigned along with other parents of children with epilepsy. Hannah Deacon, 38, of Kenilworth, Warwickshire, took son Alfi e Dingley to Holland and found that cannabis oil improved his debilitating condition. Alfie, six, was eventually given permission to use the drug here. Mother Charlotte Caldwell, 50, of County Tyrone, was given back illegal cannabis oil seized at Heathrow after the Home Office granted an emergency licence for treating her son Billy, 12. https://www.express.co.uk/life-style/health/1011840/let-my-boy-have-cannabis-to-control-his-epileptic-fits
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