It was a risk, but a necessary one, to raise awareness of the fact that cannabis oil was the only thing that would help Teagan, who lives with severe treatment-resistant epilepsy, and sometimes suffered up to 300 seizures a day.\u00a0<\/span><\/p>\r\n Their story was one part of the high-profile campaign that ultimately led to cannabis being rescheduled to allow it to be prescribed for medicinal purposes in November 2018. Teagan was among the first people in the UK to get a legal prescription.\u00a0<\/span><\/p>\r\n But five years later, Teagan is about to turn 13, and Emma is once again faced with losing access to the treatment that has been so transformative for her daughter.<\/span><\/p>\r\n In June,\u00a0 after a year of uncertainty over its supply, Bol Pharma stopped manufacturing Celixir20, a high-CBD cannabis oil, which was prescribed to around 30 children and young people with epilepsy in the UK.<\/span><\/p>\r\n Teagan had been taking Celixir20 for three years<\/a>, having found it to be the most effective product for reducing her seizures and improving her overall quality of life. While there are other whole-plant cannabis oils available, the exact make-up of each one differs, and doctors don\u2019t recommend switching medications in a patient with epilepsy when they are responding well \u2013 with some experts even saying changing cannabis oils<\/span> can be \u2018highly unsafe\u2019.\u00a0<\/span><\/a><\/p>\r\n Emma has been using what oil she has left sparingly to try to make it last, but she has already seen an increase in Teagan\u2019s seizures and aggression in recent weeks.<\/span><\/p>\r\n \u201cIt\u2019s gutting. I\u2019m pretty much back where I was five years ago,\u201d she says.\u00a0<\/span><\/p>\r\n \u201cShe\u2019s not in hospital, which is the main thing, but her quality of life is starting to suffer again. We\u2019re going to have to go back to Bedrolite and Bedica, which isn\u2019t the best for her, but even getting a prescription for that is going to be a nightmare at the moment, so we may be forced to go back to breaking the law.\u201d<\/span><\/p>\r\n Teagan\u2019s paediatric neurologist is about to retire and the only other doctor prescribing for children with epilepsy is not taking on any new patients.<\/span><\/p>\r\n Teagan Appleby.<\/p><\/div>\r\n It\u2019s a life and death situation for Teagan, Emma explains.<\/span><\/p>\r\n \u201cThis medication keeps Tegan alive; it\u2019s imperative that she has it. We nearly lost her in 2018 before we started cannabis oil, and when we ran out in the first lockdown, we nearly lost her again,\u201d she continues.<\/span><\/p>\r\n \u201cIt\u2019s hard enough having a disabled child to care for and trying to find \u00a32,000 a month to pay for her medication, but now we\u2019re faced with the fear of not being able to get a prescription and having to break the law just to keep your child safe.\u201d<\/span><\/p>\r\n She adds: \u201cDon\u2019t get me wrong, I\u2019ll do it in a heartbeat because she\u2019s my world, but I shouldn\u2019t have to be in this situation.\u201d<\/span><\/p>\r\n Teagan\u2019s NHS neurologist is supportive of her taking cannabis and even wrote a private prescription to release the oil when it was confiscated by customs in 2018, but his NHS trust wouldn\u2019t support him to continue prescribing.\u00a0<\/span><\/p>\r\n Even though cannabis medicines have been legal to prescribe for almost five years, for various reasons, paediatric neurologists are reluctant to put their head above the parapet and do so. And even when they are willing to, many are unable to get the backing of their NHS bosses.\u00a0<\/span><\/p>\r\n Cannabis Health<\/span><\/i> first reported on this issue back in 2021, <\/span><\/a>highlighting that there was only one consultant prescribing to children with epilepsy in the UK. Despite the efforts of parents, campaigners and advocates, little has changed.\u00a0<\/span><\/p>\r\n Matt Hughes, co-founder and director of<\/span> Medcan Family Foundation<\/span><\/a>, which supports the families of children with epilepsy, puts it down to challenges with current policy and guidance from governing bodies which prevent consultants from coming forward.<\/span><\/p>\r\n \u201cIt\u2019s incredibly sad that after five years since the change in law, which came about because of campaigns from children, we have seen very little progress, and in recent weeks a step backwards,\u201d says Matt, whose son Charlie has a form of epilepsy known as West syndrome and was also prescribed Celixir until recently.\u00a0<\/span><\/p>\r\n \u201cCurrent policy and guidance from governing bodies hinders progress for paediatric clinicians. Despite some agreeing cannabis medicines are benefitting their patients, they feel unable to engage. It\u2019s incredibly upsetting and infuriating for families who are directly impacted, who themselves feel unable to have open conversations with their NHS clinician about the use of cannabis for their child.\u201d<\/span><\/p>\r\n Charlie Hughes<\/p><\/div>\r\n Many blame <\/span>guidance from the British Paediatric Neurology Association (BPNA)<\/span><\/a> \u2013 of which the majority of paediatric neurologists in the UK are a member \u2013 which<\/span> doesn\u2019t recommend<\/span><\/a> the prescribing of products containing THC due to a \u2018lack of evidence of safety or efficacy\u2019.\u00a0<\/span><\/p>\r\n This lack of support places doctors in the difficult position of having to go against their colleagues and potentially put their careers on the line.<\/span><\/p>\r\n Cannabis Health<\/span><\/i> understands that some cautious progress is being made behind the scenes in regards to bringing on new paediatric prescribers.<\/span><\/p>\r\n In the meantime, Professor Mike Barnes, the neurologist who obtained the first full licence to prescribe cannabis oil to Alfie Dingley in 2018,<\/a> confirmed that he has gone back on the specialist register to prescribe to those children with existing prescriptions as a short-term solution.\u00a0<\/span><\/p>\r\n \u201cI am pleased that I am able to help these children but it is only putting a sticking plaster over the problem,\u201d he tells us.<\/span><\/p>\r\n \u201cThe real problem here is the intransigent attitude of the BPNA. I simply do not understand their objection to allowing children to at least try cannabis when all else has failed. What is stopping them? Pride? Arrogance? Inability to admit they are wrong? I hope eventually their attitude changes and they can work to help children rather than failing them.\u201d<\/span><\/p>\r\n Meanwhile, Robin Emerson, founder of the <\/span>Jorja Emerson Centre<\/span><\/a>, <\/span>says he has been meeting with paediatric neurologists to try to convince them to come on board in the long term.\u00a0<\/span><\/p>\r\n \u201cWe have been engaging heavily with various different paediatric neurologists to try and get them on board,\u201d says Robin, whose daughter Jorja also has a rare form of treatment-resistant epilepsy.<\/span><\/p>\r\n \u201cA lot of their fears are around safety and monitoring. They\u2019re concerned about the responsibility they are taking on and having a safe environment to monitor [these children] in.”<\/span><\/p>\r\n Robin Emerson, founder of the Jorja Emerson Centre<\/p><\/div>\r\n \u201cThe problem is most don\u2019t understand medical cannabis,” Robin continues.<\/span><\/p>\r\n “Every one of them is worried about what will happen to their NHS careers. I think we need to have open conversations, not only with paediatric doctors, but doctors in general and the fear that is put into them about being part of something like this.\u201d<\/span><\/p>\r\n Robin has also tried to engage with the BPNA to discuss its stance on the prescribing of unlicensed cannabis medicines.\u00a0<\/span><\/p>\r\n \u201cThey simply turn around and say a full randomised control trial (RCT) needs to be completed on a market authorised medicine. That\u2019s not an answer. That\u2019s an answer for 10 years down the line,\u201d he says.<\/span><\/p>\r\n \u201cWe have to look for a real solution to be able to give these children their medication in a safe and controlled manner. We have to be able to get that access now, rather than having to wait for a drug to obtain full market authorisation, which we don\u2019t have to do for so many other drugs. That\u2019s part of the hypocrisy that\u2019s in play.\u201d<\/span><\/p>\r\n Regulators repeatedly call for more clinical evidence and RCTs before cannabis can be recommended for prescription on the NHS. Despite the <\/span>promise of two RCTs<\/span><\/a> to compare the effects of medicines containing CBD, and CBD with THC, there has been no further updates on the status of these from the National Institute for Health and Care Research (NIHR).\u00a0<\/span><\/p>\r\n Even if they were to begin imminently, RCTs are lengthy and would mean some children coming off the medication that they rely on and being given a placebo, which could place their lives at risk. Meanwhile, <\/span>a growing database of real-world evidence <\/span><\/a>finds that cannabis is safe and effective for reducing seizures and improving quality of life in epilepsy.<\/span><\/p>\r\n \u201cWe completely understand the concerns of clinicians in wanting further data, in particular \u2013 safety; we want only the best for our children. However, RCTs are yet to begin, and are many years away from completion,\u201d says Matt.<\/span><\/p>\r\n \u201cThis leaves families in an untenable situation given that primary treatments, including brain surgery, have failed to control their child\u2019s seizures.\u201d<\/span><\/p>\r\n Meanwhile, many anti-epileptic medications are unlicensed and routinely prescribed \u2018off label\u2019 through the NHS, despite not having gone through RCTs.<\/span><\/p>\r\n As Emma says: \u201cTeagan\u2019s rescue medication is so strong it melts plastic, and that goes straight into her bloodstream. <\/span>Why is it okay for her to have that unlicensed medication, but I can\u2019t give her a plant?\u201d<\/span><\/p>\r\n Robin is calling for some form of compassionate access to help children imminently while these lengthy trials are carried out.<\/span><\/p>\r\n \u201cI\u2019ve always said that we need a two-pronged approach to this,\u201d he says.<\/span><\/p>\r\n \u201cWe need to move forward with the clinical research, but there also needs to be more compassionate understanding from clinicians, given that we are talking about extremely ill children with debilitating conditions and life-limiting conditions.”<\/span><\/p>\r\n He adds: \u201cIt\u2019s quite sad that we don\u2019t have a single paediatric neurologist willing to come forward on a compassionate basis to help these children.<\/span><\/p>\r\n \u201cChildren like Jorja were the reason medical cannabis was legalised, but now they\u2019re being left behind.\u201d<\/span><\/p>\r\n In the background to all this is the fact five years on we are still no closer to the NHS access which many expected on 1 November 2018. Despite the fact that three known children in the UK already have NHS prescriptions<\/a> for unlicensed cannabis medicines, dozens of others are still forced to raise thousands of pounds a month to pay for them privately.<\/span><\/p>\r\n Last week parents from the campaign group End Our Pain once again called on Number 10 and the Department of Health and Social Care (DHSC) to review the policy. <\/span>On Wednesday, 12 July, a video of 12-year-old Ben Griffiths having a distressing seizure after running out of THC was displayed outside Westminster.\u00a0<\/span><\/p>\r\n Ben cannot survive without his medical #cannabis<\/a> medication that he is being denied free #NHS<\/a> access to. \u2018Back at square one\u2019<\/b><\/h4>\r\n
![\"\"](\"https:\/\/cannabishealthnews.co.uk\/wp-content\/uploads\/2023\/07\/teagan-300x275.png\")
Why are paediatric neurologists not prescribing?<\/h4>\r\n
![\"\"](\"https:\/\/cannabishealthnews.co.uk\/wp-content\/uploads\/2023\/07\/Untitled-design-2023-07-14T123454.863-300x253.png\")
Short-term solutions and ‘sticking plasters’\u00a0<\/b><\/h4>\r\n
![\"\"](\"https:\/\/cannabishealthnews.co.uk\/wp-content\/uploads\/2023\/07\/image0-1-300x200.jpeg\")
Calls for more \u2018clinical evidence\u2019 met with pleas for compassion\u00a0<\/b><\/h4>\r\n
Three NHS prescriptions\u00a0<\/strong><\/h4>\r\n
This short film is driving around Westminster to show the huge difference cannabis makes to his health. He has to pay up to \u00a32,000 a month to stay alive. pic.twitter.com\/lStay1mDzS<\/a><\/p>— Boisterous Ben (@BenBoisterous) July 12, 2023<\/a><\/blockquote>