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  1. https://www.mirror.co.uk/tv/tv-news/billy-caldwells-mum-blasts-orchestrated-16188052 Charlotte Caldwell insisted that her son had been 'discriminated' against as the new BPNA guidelines have prevented Billy from receiving his new cannabis medication Billy Caldwell's mum Charlotte has hit out at the "orchestrated cruelty" against her epileptic son after he was refused medical cannabis medication again. The campaigner said that the new BPNA guidelines have meant that her son has been "discriminated" against. Charlotte revealed that she and Billy had needed to travel to Canada to get the medication that he needed. But now that he was back in the UK he was unable to access it. This comes after the law was changed on November 1 2018 in the UK, which allowed doctors to prescribe them under certain circumstances. Charlotte says her son's seizures are stopped by using CBD oil but that she has had to change the type in order to fit with her son. Billy Caldwell's mum Charlotte has hit out at the 'orchestrated cruelty' against her epileptic son (Image: Ken McKay/ITV/REX) Charlotte with son Billy, who she says has been 'discriminated against' (Image: PA) Read More Phillip Schofield forced to halt This Morning interview with Doctors cast live on air Appearing on This Morning today, she explained the situation to Holly Willoughby and Phillip Schofield. "I'm being told because of the new BPNA guidelines and because there's no clinical trials data to warrant writing a prescription for a child with epilepsy [he can't receive the treatment," she said. Charlotte appeared on This Morning today to speak about the issue (Image: Ken McKay/ITV/REX) She revealed that her son's medication runs out today (Image: Ken McKay/ITV/REX) "Ironically Billy changed the law and billy ended up being exiled out of his own country for four months in freezing cold temperatures from anything from -19 to -28 degrees [in Canada]. "The BPNA guidelines state very clearly that if the doctor can justify the clinical need, they can write a prescription for medical cannabis for these children.
  2. https://news.sky.com/story/time-running-out-for-epileptic-boy-denied-cannabis-prescription-11720781 'Time running out' for epileptic boy denied cannabis prescription Charlotte Caldwell says the consequences could be very serious if doctors refuse to give her son a new supply of his medicine. A mother says her son with life-threatening epilepsy is "running out of time" after doctors refused to give him a prescription for medicinal cannabis. Billy Caldwell's case helped persuade the home secretary to change the law on the drug last year - but he now has just nine days' supply left. The cannabis oil dramatically reduces Billy's seizures and gives him a much better quality of life, says his mother. Charlotte Caldwell told Sky News that a world-renowned Great Ormond Street specialist has advised Billy's doctor to prescribe the medicine, but she has so far heard nothing back. She says it is "unfair and cruel" and claims the same doctor is giving it to another child in Northern Ireland, and that another is getting it on the NHS in England. Ms Caldwell, from County Tyrone, has paid for the drug privately before - but at more than £6,000 for three months' supply she simply can't afford it anymore. "I'm a single mum with a special needs child and I don't have the money, I just can't do it," says Ms Caldwell. "I'm frightened and extremely worried for Billy because it's almost like history repeating itself." She told Sky News: "Billy is running out of time. We're heading to a crisis situation. Image: When Billy's medicine was confiscated last year he had to be rushed to hospital "I've tried to be dignified and work with doctors and give the doctor in Belfast all the evidence... I don't know what else I can do. We're on the countdown again." Ms Caldwell is urging Health Secretary Matt Hancock and health bosses in Northern Ireland to meet her as the clock ticks on her son's supply. The Department of Health has said it does not intervene in doctors' decisions and will consider the Great Ormond Street opinion when it gets a formal report. Billy, 13, was getting cannabis oil through the public health system for over a year until May 2018, when his GP was ordered to stop. The family went to Canada to get a supply but it was confiscated when they flew into Heathrow Airport. After four days without the drug, Billy was rushed to hospital when his seizures "returned with a vengeance" and Ms Caldwell says she thought he might die. The home secretary's intervention meant Billy and other children eventually got permission for the medication. 'I had to break the law and grow cannabis' Carly has chronic pain but the NHS won't pay for medicinal cannabis to ease her symptoms It also helped change the law, and in November 2018 specialist doctors were given the power to prescribe cannabis-based medicines. However, patients say the NHS is reluctant to sign off on them, and some have been forced to go private or illegally grow their own supply. Billy and his mother returned to see Canadian experts last winter after his "seizures started to break through" as he entered puberty. He was put on a new cannabis medicine, but Ms Caldwell says they ended up "exiled" there after being warned she could be arrested. "I got a call in Canada from a director of the Belfast trust telling me that Billy's doctor would not be supporting his new prescription, so it would be illegal for me to return to the UK with the prescription," says Ms Caldwell. After months in the freezing Canadian winter, they were finally able to return in February after a doctor agreed to a private prescription. Image: Billy's case helped change the law on medical cannabis last year Now, with the money for private treatment gone, Ms Caldwell says the family's specialist paediatric doctor is refusing to give them a fresh supply because of new guidelines and a lack of clinical data. She says a referral to Professor Helen Cross at London's Great Ormond Street children's hospital three weeks ago was "amazing" and gave the family hope. The expert recommended that Billy be given the medicine and Ms Caldwell is now desperately waiting to hear if her local specialist will take it on board. "How come that other child is getting their medicine under the new guidelines and with no clinical trial data in Northern Ireland, by the same doctor?" says Ms Caldwell. "I'm not attacking those families," she adds. Image: An expert at Great Ormond Street Hospital has recommended that Billy gets the medicine "I'm delighted they got their medicine after Billy got his, but how come we have a GP in England writing a prescription for medicinal cannabis for another child on the NHS." "This is the little boy who changed the law... I am angry, I'm frustrated, I'm sad, I'm frightened, I'm worried. I'm totally at a loss." Northern Ireland's Department of Health did not comment on Ms Caldwell's claims that another child was getting the medicine. However, it said it had approved the medicine last year but that Billy's mother had "sought an alternative unlicensed cannabis-based product on a private basis". "Any changes to clinical care are a matter first and foremost between the patient and the patient's clinician," said a spokesperson. They said the department was aware of the second opinion from Great Ormond Street and that a formal report was "expected shortly" and would be "considered when received".
  3. https://www.belfasttelegraph.co.uk/news/northern-ireland/billy-caldwell-home-for-good-after-cannabis-oil-medication-guaranteed-37801794.html Billy Caldwell home for good after cannabis oil medication guaranteed 11 Tyrone teen Billy Caldwell with mum Charlotte. He can now be prescribed medicinal cannabis oil By David Young February 11 2019 Castlederg teenager Billy Caldwell has returned home from Canada after medics pledged to give him the cannabis oil he needs to stabilise his epilepsy. Billy and mum Charlotte were forced to fly to North America three months ago to get the 13-year-old his medication when - despite a change in the law here - no doctor in the UK would prescribe it. Mrs Caldwell and her son landed at Heathrow Airport yesterday after receiving assurances that the special cannabis oil would be available to them. She told the Sunday Times: "I have been assured that the NHS Trust in Belfast and Billy's NHS doctor are going to help. "I'm feeling a wee bit emotional. "It feels like I'm getting out of jail." She added: "I scoured the UK and Ireland for doctors who would do this. "I have lost count of how many emails I sent and phone calls I made." Speaking in a video posted on Facebook as they prepared to fly home across the Atlantic, Charlotte thanked the Home Office and everyone who had worked to help her son. "I'm just a wee bit overwhelmed, because I never thought we'd actually manage," she said. "The three months we've spent here have been extremely difficult," the campaigning mum added. Her voice trembling with emotion, she continued: "I'm sure everyone is aware that while this is extremely good news for me and Billy, there are so many other children that desperately need this medicine." In 2017 Billy was able to get an NHS prescription for the special medicinal cannabis oil that treats his epilepsy. But his GP was then prevented from prescribing any more to control his seizures. Last June when Mrs Caldwell tried to import some of the oil from Canada, where it can be legally obtained, the substance was seized from her by customs officials when she landed at Heathrow. Just hours later, without the cannabis oil, Billy's condition rapidly worsened and he was rushed to hospital in London, prompting Home Secretary Sajid Javid to intervene to get the sick child the medicine he needed. A review later changed the law to make the medicinal cannabis oil legally available in the UK But doctors were still reluctant to prescribe it to Billy, citing guidelines issued by professional bodies which discouraged GPs from doing so. That meant that, to keep receiving his life-saving medicine, Billy and his mum had to return to Canada for his treatment. Mrs Caldwell is hopeful that now there is collaboration between the medical authorities in the UK and experts in Canada, neither Billy, nor any other child in need of similar treatment, will face the same bureaucratic hurdles again in obtaining a potentially life-saving medicine. "For the first time, connections have been made between the medicinal cannabis experts in Canada and doctors in the UK," Charlotte told the Sunday Times. "That is a huge step forwards for us in the UK, not only for Billy. The doctors that are talking now will hopefully start writing prescriptions for other children who desperately need this medicine."
  4. Leave us alone or arrest me': Mother is set to openly ‘smuggle’ banned cannabis oil into Heathrow to keep her epileptic son alive Billy Caldwell, a lively 12-year-old boy with autism and intractable epilepsy, has up to 100 fits a day He became the first patient in Britain to be prescribed cannabis-based medication on the NHS His doting mum Charlotte believes cannabis oil keeps him alive but now it is banned in Britain She has flown to Toronto to buy it and will openly 'smuggle' it into Heathrow Airport in London The desperate mother of a boy suffering from severe epilepsy plans to fly back to Britain tomorrow with a consignment of medical cannabis obtained in Canada and declare it to customs officials. The dramatic move by Charlotte Caldwell to openly defy drug laws is the most brazen challenge yet to Ministers over the ban on medical use of marijuana. It presents new Home Secretary Sajid Javid with a dilemma over whether to strip her of a medicine credited with saving her son Billy’s life. ‘I will ask them if they will let me keep this safe, regulated medicine that has kept my little boy alive – or are they going to take it off me, condemning my son to possible death?’ said Ms Caldwell. ‘If they confiscate Billy’s medicine and arrest me, they are signing his death warrant.’ Billy, a lively 12-year-old boy with autism and intractable epilepsy, became the first patient in Britain to be prescribed cannabis-based medication on the NHS after enduring up to 100 seizures a day and routinely ending up in hospital. He was originally given the treatment by a doctor in the US, where it is legal in the majority of states. Ms Caldwell said it rapidly stopped Billy’s seizures and drastically improved his quality of life. But the single mother from Castlederg, County Tyrone, was left distraught last month when the Home Office told her family doctor to stop doling out the drug or face disbarment. ‘I had to read the email six times in disbelief,’ she said. So on Thursday – one day before her son’s supply ran out – she flew to Toronto to get a new prescription, accompanied by this newspaper. She will return tomorrow with a six-month supply of a specialist cannabis oil, which is administered in oral drops. ‘I hate having to do this,’ she said. ‘For a mother to be pushed into breaking the law to keep her son alive is horrendous. But this drug has given me hope and given my son back his right to life. 'Of course I worry about breaking the law – but I want my son illegally alive rather than legally dead.’ Ms Caldwell will be met at Heathrow by the parents of eight other children with epilepsy supporting her campaign. ‘We’re fighting not just for ourselves but to give all those other families the right to hope,’ she said. They are backed by Dan Poulter, a former Tory Health Minister who still works part-time as a doctor in mental health services. He recently started an all-party parliamentary group supported by three other doctors at Westminster pushing to legalise medical cannabis. ‘The current law is ridiculous,’ said Mr Poulter. ‘There is growing evidence cannabis products used medically can be helpful in a number of conditions, but it is still seen through the prism of illegality.’ He called on Ministers to ensure Ms Caldwell is allowed through customs unimpeded. ‘This is both medically the right thing to do and humanely the right thing to do.’ This challenge comes amid growing pressure for reform from patients and families. Three months ago, Theresa May met the parents of Alfie Dingley, a six-year-old with epilepsy, who had been treating their son successfully with an oil obtained in Holland. Ms Caldwell’s trip to Canada, where she is pictured with Billy, was aided by the Centre for Medical Cannabis, a pressure group led by former government adviser Blair Gibbs Mrs May was moved by the case and promised to find a way to make the medicine available for them in Britain. Home Office officials, however, fear opening the floodgates for other patients who would be able to seek judicial review if denied cannabis treatment. Ironically, Britain is the world’s largest exporter of legal cannabis grown for medical markets. A recent poll found three-quarters of voters back doctors being permitted to prescribe cannabis. Ms Caldwell is a passionate promoter of the cause after seeing the dramatic impact on her son’s life. Even after 20 hours awake, travelling from Ulster to London, then on to Toronto, Billy was smiling and energetic – despite standing up for much of the transatlantic flight. On Friday, the boy was examined by doctors. They also questioned Ms Caldwell on his medical history and weighed her son before prescribing the drug and setting the dose. I agreed not to reveal the doctors’ names. But one said he had seen at least ten other British patients in the past two years at his Ontario clinic. ‘I have no doubt this is an effective drug,’ he said. ‘A couple of years ago, lots of my colleagues did not agree with prescribing it but now they are referring patients to me and telling their families to come here for treatment.’ Ms Caldwell calls epilepsy ‘brutal’ for its destructive impact on families and sufferers. But the doctor said cannabis could reduce the intensity of seizures, soften their impact, enable patients to cut powerful cocktails of prescribed drugs and slash the number of attacks. ‘I love hearing that one of my patients has not had a seizure for six months,’ he added. These are dramatic claims, especially given the risk of sudden death during seizures. Sceptics argue much evidence is anecdotal, although there is more and more clinical data as use of medical cannabis rises. ‘It’s not a miracle drug but it deserves respect,’ said one expert. The laws on the medical use of marijuana were liberalised in 2001 in Canada – on the day we arrived it also sanctioned the legalisation and regulation of recreational use. The drug prescribed for Billy is made by Tilray, a British Columbian manufacturer. Like most cannabis-based epilepsy medicines, it has a very high ratio of CBD (the non-psychoactive chemical found in the plant) to THC (the chemical that intoxicates users). Doctors told me it would be impossible to use this drug to get high – and since it is an oil, the THC cannot be separated out. Cannabis products containing THC are illegal in Britain. Tilray’s director of clinical research Catherine Jacobson, whose own child has epilepsy, said cannabis contains more than 100 different chemical compounds so the challenge was to work out which worked for particular conditions, then the correct doses. ‘I would never give my son street cannabis,’ she said. ‘You do not know what you are giving them or how much you are giving them.’ Britain’s cannabis ban comes under the 1971 Misuse of Drugs Act. Campaigners argue this muddles recreational and medical use but Ministers are wary of reform amid concerns that stronger street cannabis is causing an epidemic of mental health problems among younger users. Yet Ms Caldwell fears the Government is forcing British parents into illegality, either by using cannabis bought from street dealers or by smuggling in medical products permitted abroad in countries such as Canada, Germany and the US. This is her latest battle since Billy’s birth turned her life upside down, forcing her to ditch a thriving career in the tourist industry. Her relationship with Billy’s father quickly fell apart and she is constantly with her son, even at night. She has one other adult son. The epilepsy became evident when Billy was four months old, leading to a 16-week stay in hospital. ‘I just felt powerless and sick in my heart,’ she said. ‘He was having hundreds of seizures a day and they could not get them under control.’ After doctors told her they could do no more for the boy, she raised £250,000 in just ten weeks to fund treatment in Chicago. She spent two years living there as her son was given intensive physiotherapy to boost his development. ‘I was kept going by love, faith and hope for Billy,’ she said. ‘I dreamed one day he might be able to run towards me and say, “Mummy.” It was like a miracle when he finally did this.’ When the cash ran out, she borrowed £25,000 from a bank to pay for private treatment and moved to Oxfordshire. ‘Eighteen months later Billy walked through the airport in Ireland. I was left with nothing but I felt triumphant that he was walking and free of seizures.’ But the epilepsy returned with frightening strength two years ago, which doctors blamed on a brain lesion triggered by earlier seizures. They raised the possibility of surgery, but it would have wiped out his memory and hard-fought ability to walk. Ms Caldwell raised more cash and returned to her US doctor, who had moved from Chicago to a Los Angeles hospital. He discussed the concept of medical cannabis, sent her to a specialist and eventually they found the correct dosage to stop the wretched seizures. After eight months in California, funds dried up again. The pair returned to Northern Ireland – and spent eight days walking 150 miles from their home to the hospital to highlight the dramatic improvements in Billy’s condition thanks to his cannabis treatment. Her GP agreed in April last year to prescribe cannabis oil, supplied by an American company – until the Government warning last month to stop. ‘My mission as Billy’s mum is to keep him alive. I scoured the globe to find the medicine that was saving his life. The debate on cannabis is so muddled – this is not recreational cannabis but a safe, regulated drug. And this is not just for Billy. There are 240 other children in Northern Ireland alone who suffer intractable epilepsy. ‘Can you imagine how cruel it is to see children having these seizures knowing there is a drug that could help but they are not allowed it? We have to find a solution.’ Ms Caldwell’s trip to Canada was aided by the Centre for Medical Cannabis, a pressure group led by former government adviser Blair Gibbs. ‘This isn’t about legalising pot but providing safe, pharmaceutical grade products for a defined set of health conditions,’ he said. The Home Office said: ‘We are sympathetic to the difficult and rare situation that Billy and his family are faced with. ‘While we recognise that people with debilitating illnesses are looking to alleviate their symptoms, it is important that medicines are thoroughly tested to ensure they meet rigorous standards so that doctors and patients are assured of their efficacy, quality and safety.’ I have rarely met a more determined person than Ms Caldwell. Her efforts have made her something of a celebrity in Northern Ireland, with one man in a wheelchair on her flight from Belfast giving her £10 with instructions to ‘buy Billy a wee gift’. So as we left one of the Canadian clinics, I asked what will she do if officials take away her son’s supply when she lands tomorrow. ‘I’ll go back and get some more,’ she said. http://www.dailymail.co.uk/femail/article-5825117/Mother-set-openly-smuggle-banned-cannabis-oil-Heathrow-epileptic-son-alive.html