Jeff Smith
MP for Manchester Withington · Labour · United Kingdom
“T9. Have Ministers noted the recent report from the University of Sheffield, which showed that drug diversion schemes for people caught in possession of controlled drugs are more successful at cutting reoffending than prosecutions? Will the Minister encourage police forces to use those schemes?”
House of Commons26 October 2026Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“My hon. Friend is making a typically entertaining and informative speech. I wonder whether she would agree that, from the customer’s point of view, there does not appear to be that much difference between tiered pricing and dynamic pricing—it is just that when the cheap seats have gone, they have to pay the premium.”
House of Commons9 September 2026Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Researchers tell me, however, that the barriers the current system puts in place really restrict research. Research involving schedule 1 controlled substances generally requires a Home Office licence, and the bureaucracy and inertia in the system adds delay, cost and an administrative burden to the extent that research grants are being lo…”
House of Commons8 September 2026Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Clauses 5 and 6 place duties on the Secretary of State to promote patient involvement, patient choice and innovation. My new clauses 86 and 87 would apply those principles to psychedelic-assisted therapy treatments involving schedule 1 controlled substances.”
House of Commons8 September 2026Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“In 2025 the Government accepted the ACMD recommendations in principle. There is supposed to be a pilot of a proposed extension to test operational feasibility, but that has not happened. The Government said the policy work was under way and that further plans would be published in due course, but without a timetable for implementation.”
House of Commons8 September 2026Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“The 2022 Canadian special access programme has allowed clinicians to request restricted drugs, including psilocybin and MDMA, to treat those conditions. We can learn from those experiences.”
House of Commons8 September 2026Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
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“This is another probing amendment, and would require the Secretary of State to report annually on how moneys from the Reclaim Fund have been spent in England, including an assessment of the value for money of the spending. The Labour party believes in the values of transparency and good value for money. Annual reporting on the spend would help to demonstrate whether the funds were being used effectively and for good causes, as intended. It would allow better scrutiny of which causes were being supported and the impact they were having. It could also help to inform future changes that the Secretary of State might want to make through secondary legislation, and would clearly show what is being delivered in practice. We urge the Minister to take this suggestion on board.”
House of Commons11 January 2022Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“(2) The first report under subsection (1) will be laid 12 months after— (a) any restriction imposed under section 18A(1)(a) of that Act comes into force, or (b) the provision in section 18A(1)(b) of that Act comes into force, (3) A report under subsection (1) must include— (a) how much dormant assets money has been distributed, (b) the causes to which money has been distributed, and (c) the Secretary of State’s assessment of the value for money of the expenditure.” This amendment would require the Secretary of State to report annually on how monies from the Reclaim Fund have been spent in England, including an assessment of the value for money of this spending .”
House of Commons11 January 2022Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I beg to move amendment 4, in clause 29, page 22, line 41, at end insert— “18B Distribution of money for meeting English expenditure: Requirement to report annually (1) The Secretary of State must lay before Parliament an annual report detailing how dormant assets money has been distributed in England.”
House of Commons11 January 2022Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I thank the Minister for his comments and I appreciate the fact that he has outlined the number of reviews that currently take place and the excellent work of the Oversight Trust and the various organisations involved. The Bill does give Parliament flexibility in terms of a way forward. We think that these reports should directly inform Parliament, which is why we proposed annual reports to Parliament. However, having listened to the Minister’s comments and assurances, I beg to ask leave to withdraw the amendment. Amendment, by leave, withdrawn. Clause 29, as amended, ordered to stand part of the Bill. Clause 30 Periodic review and report to Parliament Question proposed, That the clause stand part of the Bill.”
House of Commons11 January 2022Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“We do not oppose the broad principle of reviewing the scheme. We support a wide-ranging review of all aspects of the scheme, which is why we tabled amendment 4 regarding annual reviews. Holding a review more frequently than the proposed three and subsequent five years would be beneficial, and I ask the Government to look at that in future. However, we will obviously not oppose the clause.”
House of Commons11 January 2022Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Happy new year, Mr Speaker. The theatres, festivals and live events that are such an important part of our tourist offer have all been hit by the uncertainty around plan B, and Government support is not working. The live events reinsurance scheme was meant to protect the music, theatre and live events sector from the impact of covid, but it has been a total flop. It does not cover cancellations due to covid outbreaks, nor does it provide support outside a full national lockdown, which no one wants to happen. Given the demand that will be caused by the continued uncertainty well into the new year, will the Government urgently review the scheme and repurpose it to give businesses and workers the support they need now?”
House of Commons6 January 2022Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I just think that the comparison with thalidomide is not one that we should be making.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“As I say, I do not think there is a lack of will from the Government, but that reflects an inflexibility in the system, which is at the root of the problem. The Bill’s modest proposals try to find a way to help overcome the barriers. It is not a magic bullet and it will not resolve all the problems, but in due course it might help some patients to get the medicine that they need.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“That problem is that medical cannabis—cannabis-based medical products—is a very helpful and effective treatment for a number of medical conditions, but significant numbers of people who would benefit from being prescribed medical cannabis on the NHS are not able to get the prescriptions that they need. When I was drawn in the private Members’ Bill ballot, I wanted to try to find a legislative way forward to address this problem. I had hoped to agree an approach with the Government. I had a number of conversations with Ministers. I do believe that Ministers want to find a way forward on this but, unfortunately, that has not been possible, which is why I have put forward the proposals that are before us today.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I beg to move, That the Bill be now read a Second time. Before I begin, I want to thank briefly a number of people who have advised me and helped bring this Bill forward today. Among others, particular thanks go to Professor Mike Barnes and Professor David Nutt; to Rudi Fortson; to the parents of children with treatment-resistant epilepsy who have talked to me—Hannah Deacon, Matt Hughes and Emma Appleby; to Peter Carroll and the great campaigners at End Our Pain; to the brilliant Adam in the Public Bill Office here in Parliament; and to Alex Worrell in my office in Parliament. We have a problem that is acknowledged in this House—across this House, I think—and certainly outside this House, and I know that Ministers also appreciate the problem and want to try to find a way around it.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I am told that there are about 10,000 private prescriptions for cannabis-based medicines in the UK for various conditions, including chronic pain, Tourette’s, anxiety and epilepsy, but virtually no one can access them on our national health service.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Gentleman just outlined, but generally they had to get it from abroad—usually from the Netherlands—or on the illegal market. The 2018 regulations, which legalised cannabis-based medical products, offered a hopeful way forward for those children and others. Hon. Members and the public would be forgiven for thinking that the problem was resolved, but, three years later, only three prescriptions for medical cannabis have been obtained through the NHS—three prescriptions in three years. Cannabis-based medical products are an appropriate treatment for a larger number of people and they have been able to access private prescriptions, but often they pay a fortune.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I thank the hon. Gentleman for his intervention. That is one example of a significant number where lives have been transformed by this medicine. There is frustration that people cannot get it as they should. When the Government passed the Misuse of Drugs (Amendments) (Cannabis and Licence Fees) (England, Wales and Scotland) Regulations 2018, which moved cannabis from schedule 1 to schedule 2, it became legal for clinicians on the specialist register to prescribe cannabis-based medical products. That legalisation came in the wake of a high-profile campaign by patients who were unable to get the medicine that they needed. The highest-profile cases—many will remember Alfie Dingley and Billy Caldwell—were of children with severe treatment-resistant epilepsy. Medical cannabis helped their conditions remarkably, as the hon.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“For many of them, it is an urgent and high-stakes issue—sometimes, it can be literally the difference between life and death—so it is right that we focus some of our discussion on them. I will offer a couple of examples to illustrate the importance and the power of this medicine to that group and others. Those in that cohort are not the only ones who can benefit. In 2018, the then chief medical officer, Dame Sally Davies, said that there is “conclusive evidence of the therapeutic benefit of cannabis based medicinal products for certain medical conditions”. That is why she recommended that they should be moved out of schedule 1.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Families of patients in the most urgent need often have to resort to support from crowdfunding or individual donors to keep their medicine going. It is just not right that patients have to resort to that for a prescribed medicine because they cannot get it on the NHS. As I mentioned, many others are forced to get their medicine through illicit means. Much of the campaigning on this issue is still focused on children with treatment-resistant epilepsy; they have been the highest-profile cohort of patients and I suspect many of the contributions to the debate will focus on that cohort. However, I want to emphasise that they are not the only patients who would benefit from access to cannabis-based medicines. They are probably the cohort most acutely affected.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“My hon. Friend makes a really important point. It is about not just medicines and health, but a life sciences opportunity that we ought to take up. The problem is that, if people cannot get the product, which, as he says, is well manufactured and safe, easily on prescription, the risk is that they will go to the illicit market and get products that perhaps should not be trusted as much as a prescribed product. Earlier this week, I spoke to a mother who has a daughter with treatment-resistant epilepsy and she pays £2,000 a month for her daughter’s medicine on a private prescription. One of my constituents pays nearly £700 a month for his grandson’s medicine. Epilepsy prescriptions can cost £1,000 to £1,500 a month—that is not unusual.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Alfie’s is a particularly unusual syndrome, but the majority of children in similar situations have not been able to get access to medicines despite their now being legal.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Eventually, as a result of the campaign led by Hannah and other families, and under immense pressure from those desperate families, the Government agreed to change the law to make medical cannabis legal. Alfie finally received an NHS prescription for the products he had found so beneficial in the Netherlands in November 2018. It is still one of only three prescriptions in the UK, and his family had to go through an unusual process and special approvals to get that medicine. Three years later, Hannah has recently reported that Alfie has not had a seizure in over 500 days. Before his medical cannabis treatment, he was having 150 fits a week. Although cannabis medicines are not a silver bullet for everyone, they have been absolutely life-transforming for Alfie, Hannah and the rest of the family.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“There they gave Alfie an oil prepared from Bedrolite, which is made by the Dutch company Bedrocan. That is a standardised strain of cannabis plant, with full extract CBD oil. Over the next three months, Alfie’s seizures became less frequent. They added THC oil called Bedica, also made by Bedrocan, under the guidance of their paediatric neurologist. Alfie went without seizures for 40 days. When he did have the clusters, they were less intense and were controlled much more easily. His cognitive development improved greatly. Living abroad, however, was really hard for the family. After five months they ran out of money, so they had to come back home to the UK. In the UK, they had to fight for a prescription that contained both CBD and THC.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Eventually, Alfie was diagnosed with a rare epilepsy syndrome which affects only nine known boys worldwide. There are slightly more girls with the syndrome, but only nine known boys in the world. Hannah, Alfie’s mum, was desperate for a solution. She researched anything that might help and came across medical cannabis, so she learnt about the human cannabinoid system and cannabis medicines. At the time, Alfie’s doctors were telling her that regular steroids would eventually kill him, so to Hannah, cannabis medicines seemed like his only chance. She began the campaign for Alfie to have a prescription of cannabis medicines in the UK, where they were illegal at the time. Once the family had raised enough money, they moved, in September 2017, to the Netherlands, where they could get medical cannabis legally.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“That is the plant, which is the basis of the medicine. I want to provide three case studies of the real-life effect of cannabis-based medicines. Probably the most famous case is Alfie Dingley and his mum Hannah Deacon, whose campaign for access to medical cannabis helped to change the law in 2018. Alfie was perfectly healthy until he was four months old, when he became constantly sick and began having seizures. The seizures continued for months and he lost every skill he had developed. He was diagnosed with auto-immune epilepsy. The amount of time between Alfie’s clusters of seizures shortened as he got older. By the time he was five, they were happening every week. Each time, he needed up to five doses of intravenous steroids, which had a really negative effect on his personality and behaviour.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“CBD on its own is legal in many countries, including this one; it is the THC content that makes cannabis illegal for recreational use in many countries. Different strains of cannabis plant have different balances of THC and CBD, and cannabis medicines do too. For example, Epidiolex, which is one of the most used medicines for severe epilepsy, is overwhelmingly CBD and has a very small amount of THC. Sativex has a higher proportion of THC. That is important because different treatments and balances work for different patients, and sometimes people have to adjust and tweak their treatment to find out what is right for them. If I refer to full-spectrum cannabis extract, that is a cannabis compound concentrate that preserves the full cannabinoid and terpene contents of the raw cannabis plant, including CBD, THC and other compounds.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“They are the compounds that act on the cannabinoid system in the human body. There are also over 100 terpenes, which are aromatic compounds; flavonoids, which are pigments; and four other minor sets of compounds, so it is quite a complex botanical plant. The complexity of the plant and its compounds is part of the issue that I will try to explain shortly, but the two main types of compounds that I am referring to are tetrahydrocannabinol, or THC, which is the psychoactive ingredient—very broadly and slightly simplistically, that is the ingredient that produces the high that recreational users experience, but it is also a painkiller—and cannabidiol, or CBD. Broadly, CBD has a more sedative effect—a kind of chill-out effect.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I will talk about the terminology in a moment, but there are two THC-based medicines—dronabinol, which is licensed for appetite loss in AIDS patients and as an antiemetic in chemotherapy, and nabilone, which is a synthetic cannabinoid medicine licensed for nausea in individuals receiving chemotherapy. There is also Sativex, a combined THC and CBD medicine, which is licensed for muscle spasticity in multiple sclerosis patients, and Epidiolex, a CBD-based medicine—it is 99.8% CBD with less than 0.1% THC—for the two rare childhood epilepsies, Lennox-Gastaut syndrome and Dravet syndrome. I am referring to THC and CBD; it might be helpful if I say a few words about terminology, and about the nature of cannabis, ahead of my next remarks about the proposals in the Bill. The cannabis plant is made up of something like 147 cannabinoids.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“The hon. Gentleman makes a really important point, and I agree. I do not agree with everything that the devolved Administration in Scotland do, but they do have an approach to these sorts of issues that is more focused on harm reduction and evidence than perhaps we have in England. Cannabis-based medicines are already approved as a treatment for a small number of medical conditions. Currently, the National Institute for Health and Care Excellence guidelines recommend four licensed cannabis-based medical products that can be prescribed in the UK.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“They could include patient reported outcome measures—PROM—trials, real-world evidence effectiveness trials, pharmacoepidemiology —I can never get that word right—which means looking at real-world evidence among a large group of patients, observational research, and n=l trials.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Even Sir Michael Rawlins, the previous head of the MHRA and NICE, pointed out in 2008 that RCTs were not the only way of obtaining getting evidence. He said: “Randomised controlled trials… regarded at the ‘gold standard’ of evidence, have been put on an undeserved pedestal. Their appearance at the top of ‘hierarchies’ of evidence is inappropriate; and hierarchies, themselves, are illusory tools for assessing evidence. They should be replaced by a diversity of approaches that involve analysing the totality of the evidence-base.” There are many other sources of evidence that could equally inform medical practice.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Cannabis-based medicines are not made up of a single compound, and patients often use bespoke mixtures to treat their conditions most effectively. Let me quote Professor Mike Barnes, as my hon. Friend the Member for Middlesbrough (Andy McDonald) did earlier. He has said: “While there are some RCTs” —randomised control trials— “for CBMPs” —cannabis-based medical products—they are generally for isolates of those products, and “the cannabis plant doesn’t lend itself to being studied this way as it’s a botanical product with several different components.” Many experts, including Professor Barnes, would argue that we need to look at a different evidence base to demonstrate the safety and efficacy of whole-plant extract cannabis-based medicines.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Secondly, we need more safe, effective cannabis-based medicines to be licensed. That is a key issue, because although there is a wide body of evidence for the efficacy and safety of cannabis medicines, it is largely patient-reported or observational and evaluative. The UK’s medical regulatory bodies generally only license medicines on the basis of randomised control trial data. I do not think anyone would deny that double-blind placebo randomised control trial data are the gold standard for medical trials aiming to demonstrate the safety and efficacy of medicines, but they are not the only way of demonstrating those qualities, and they are very difficult to carry out on whole-extract plant cannabis products.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Perhaps the Minister could enlighten us, because although the Government committed themselves to doing that in 2019, it has not happened. The only solution suggested so far is an individual funding request, but we know that families who have tried to take that route have been rejected and told that the patient has not demonstrated clinical exceptionality. It is very difficult to obtain funds in that way. If the impact that medical cannabis has on that cohort of epileptic children with extremely rare and severe diseases is not deemed clinically exceptional, I would ask what is. There are two ways in which we need to make progress. First, we need clinicians to be confident in the specials that they are able to prescribe, and we need NHS bodies to be confident enough to fund them.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“The specialists who do want to prescribe usually face barriers from their NHS trust or CCG, which normally declines to fund the prescriptions. If an NHS prescription is to be made, it has to go for approval to what is called a higher authority, usually a CCG or trust, which is usually reluctant to fund because of the problem relating to evidence and contradictory guidance. I should add that that process applies to no medicines other than medical cannabis. For some time, campaigners have pressed the NHS and the Department of Health and Social Care to explain the process and the pathway that can deliver an NHS prescription in cases in which an NHS specialist wants to prescribe cannabis-based medical products.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“In the narrow pool of those who can prescribe, there is often a reluctance to prescribe unlicensed cannabis-based medicines, owing to a lack of knowledge and training; confusion over conflicting guidance from Government bodies such as the National Institute for Health and Care Excellence, and from the NHS and professional bodies such as the British Paediatric Neurology Association; a lack of confidence in the evidence base because of a lack of randomised controlled data; and ultimately a fear of repercussions because of the personal liability when prescribing an unlicensed medicine. Currently, only specialist doctors on the General Medical Council specialist register are allowed to initiate a prescription, although GPs can carry it on under the guidance of a specialist.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“One is now retired, and the others are not able to take on any more patients, so there is another blockage. There is also a reluctance among clinical commissioning groups and trusts to fund prescriptions; Lucy’s hospital trust is a good example. At the moment, only a small number of cannabis-based medicines are licensed by the Medicines and Healthcare Products Regulatory Agency for the small number of specific conditions that I outlined earlier, so the cannabis medicines that are generally prescribed in the UK are unlicensed and prescribed as “specials”. Clinicians, even specialists, are sometimes reluctant to prescribe those unlicensed products.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Virtually nobody can get medical cannabis on prescription on the NHS, but the Government accept its efficacy enough to have done a deal with the Dutch Government to ensure a supply of Bedrocan for UK families and have even gone to lengths to start having it produced in the UK. It does not make any sense at all—it cannot be right. Why are we in a situation where patients cannot get these NHS prescriptions? The general consensus is that it stems from a nervousness regarding the evidence and the guidance about these medicines, and a consequent reluctance of many clinicians to prescribe on the NHS. There are a very limited number who will prescribe privately: in the case of childhood epilepsy, there have been only three specialists willing to prescribe.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“We know that they are legal. We know that they are effective. They are being privately prescribed by some specialists in the UK, but patients cannot get them on the NHS, so ordinary families are sometimes paying a fortune for their treatment. Some are having to go to Holland to get their medication. One thing really demonstrates the absurdity of the situation. Because of import-export problems since Brexit, it has now become even more difficult to import Bedrocan products, which are the medicines produced in Holland, so the Government have done a deal that has facilitated the imports and licensed production facilities in the UK.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“As an example of the potential saving to the NHS, when Lucy was on a feeding tube her medication alone cost more than £250 a day, and the hospital room cost very much more. Overall, the estimated cost to the NHS is probably more than £100,000 a year. Despite the huge savings, her local hospital trust refuses to allow her physician to prescribe medical cannabis for her on the grounds of “lack of evidence of efficacy”. That is the key problem in the UK: the difficulty of getting through the barriers in the system. Lucy’s life has clearly been absolutely transformed by medical cannabis, but because of the systemic barriers, she has not been able to access it through the NHS. That is not logical in any way. It would make much more sense for the hospital trust to support her. We know that cannabis-based medical products work for many patients.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“She has since become able to walk unaided. She is now back in the UK and she started a degree in neuroscience at the University of Sussex this September. Lucy’s private prescription for cannabis in the UK initially cost £1,450 a month. She is now enrolled in a medical cannabis trial called Project Twenty21 run by an organisation called Drug Science. I draw attention to my entry in the Register of Members’ Financial Interests: I am an unpaid trustee of Drug Science, which does fantastic work in its research into drugs. Project Twenty21 facilitates access to medical cannabis effectively at cost price, once patients have been seen and diagnosed by specialists, so Lucy’s medicine now costs her about £450 a month.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“As many people know, fentanyl is an opioid that has been responsible for a very large number of overdose deaths in the USA. We do not really want people to take it if there is an alternative. The alternative to lots of opioid treatments is, in my view, medical cannabis. Lucy faced extreme pain from a permanently dislocated jaw, and when she was in hospital, she faced potential death from sepsis. Lucy’s pain specialist suggested medical cannabis as a last resort. The prescription was turned down for NHS funding, with a letter saying that cannabis was unlikely to work and that there was a one in four chance that she would end up with psychosis, so Lucy and her mother went to Amsterdam and sourced medical cannabis. Eventually, her jaw began to unlock. She was able to reduce her opiates and other pharmaceutical medications.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“My mum and I are so scared of more seizures again and that I won’t be allowed to carrying on living a healthy life like I can now.” As a result of the barriers to access in the UK, the mother and son are effectively living in medical cannabis exile in the Netherlands. That is not right. The third example is not a child with epilepsy. Lucy Stafford has a condition called Ehlers-Danlos syndrome. She had been almost permanently in hospital, having suffered from joint dislocations after her first surgery when she was 10 and another 19 operations throughout her teenage years. Her condition deteriorated. She became bed-bound at 17. She said: “I was kept alive by intravenous feeding tubes and taking fentanyl to ease the debilitating pain of dislocating multiple joints a day”.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“When they tried to wean him off the cannabis-based medicine, Bedrolite, his symptoms rapidly deteriorated and he almost died. He was put back on an increased amount of Bedrolite in combination with two newer anti-epileptics, and he has now been completely seizure-free for more than a year. That young man’s health depends on Bedrolite, which is a fraction of the cost of the emergency hospital treatment that he used to require. His Dutch neurologist said that adults with uncontrolled epilepsy as severe as his would likely have to live in an institution for their whole lives. However, the young man writes: “I’m now able to think about my future for the first time in years and want to go to art school. We are desperate to come home but I’m really afraid of the seizures starting again if I’m not allowed a prescription for Bedrolite.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“In 2017, after trying treatment on seven different anti-epileptic drugs and 16 different combinations, he was diagnosed with drug-resistant epilepsy. A cocktail of pharmaceuticals left him with impaired cognition, memory loss and an inability to process new information. He was still having regular seizures and was often in and out of hospital, requiring emergency treatment for status epilepticus: a seizure or a series of seizures that last for more than five minutes and can be fatal. In 2018, desperately looking for anything that might help, the boy’s mum took him to the Netherlands, where a hospital agreed to treat him with Bedrolite. The doctors there eventually concluded that conventional anti-epileptic drugs were making his seizures worse and weaned him off them gradually, resulting in his cognition and memory improving.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“My hon. Friend makes a really important point. They have nothing to lose. The problem is that we have to balance benefit and risk and, for this cohort of children and lots of medical cannabis patients across the country, the benefit is far greater than the risk. That is the frustration, and the problem with access to medicine is that lots of patients with different conditions would benefit massively and, if we are being honest, I think we all know that the risk is pretty low. I want to contrast Alfie’s case with the story of another mum and her son who does not have a prescription for his epilepsy. This young man is now 18; he started having seizures in 2016 when he was 12—does that add up? I thought I had got my dates wrong, but that is correct.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“I hope that the commission’s work will result in a more suitable framework for the assessment of the efficacy and safety of cannabis-based medicines, which I hope would result in more cannabis-based medicines, including whole-plant medicines, becoming licensed. That would go a long way towards addressing the problem. It would improve the likelihood of prescription on the NHS for both severe and common conditions. The commission would also be tasked with identifying any other barriers that could be overcome to improve access. That might result in the adoption of short-term solutions that I will touch on shortly.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Unfortunately, the Government’s view seems to have changed. I have spoken to Ministers and officials again, and they seem to be wedded to the idea that RCTs are the only way forward. My Bill would set up a commission to propose a framework for the assessment of cannabis-based medicines and their suitability for prescription in England, to sit alongside the existing MHRA processes for conventional pharmaceutical drugs. The commission would help rigorously to assess all the existing evidence base and to consolidate all the available evidence, which could give those who are eligible to prescribe more confidence in the evidence for prescribing this particular unlicensed medicine.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“Another issue is that many people would argue that it is not ethical to insist on RCTs for the cohort of children with epilepsy, as they would have to be taken off the medicine that is keeping them well, and keeping them alive in some cases, to put them on a placebo. Some people would question that process. In 2019 the Health and Social Care Committee looked at the barriers to access for cannabis-based products, and the Government produced a response to its report in which they made reference to the need for observational trials to help the patient cohort of children with severe epilepsy. Even the Government argued that we should be considering other forms of evidence, and I know from my interaction with the MHRA that it is considering other forms of rigorous, well-researched evidence.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“That is an important point. No one is claiming that every product is absolutely safe, and products often have side-effects, as Alfie’s case demonstrated. He had been pumped full of steroids which affected him badly and would eventually have killed him. That was a medication that was recommended until he started taking medical cannabis. There is lots of evidence from around the world. Cannabis-based medicines have been legal in Canada and some US states for some time, and there are tens of thousands of individual patient reports on the therapeutic value of cannabis-based medicines in the Canadian and, in particular, Minnesotan databases. They do not equate to the so-called gold standard double-blind randomised control trial level of proof, but they are highly suggestive of a pattern of evidence that should be taken seriously.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“The hon. Gentleman makes an important point. Trials are happening, but there are two problems. The first is the cost, because RCTs are extremely expensive. As I mentioned earlier, the problem with RCTs is that they are not really suitable for some of these medicines, such as whole-plant cannabis extract medicines, which is the essential problem. We can isolate compounds and put them through the RCT process, but it is much more difficult with whole-plant cannabis extract medicines. Those are the two difficulties, and I will go on to suggest that the Government could commission trials as a possible way forward.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“The matter is not being resolved in the current processes, and that is part of the problem. I emphasise that I am not proposing a new permanent body; this would be a bit like a royal commission, although I would want it to be much shorter and more focused. It would be a commission of experts to look at the problem and propose a new framework for assessment of the evidence. That would, I hope, lead to a better process for licensing. I reassure the hon. Gentleman that I am not proposing any new bureaucracy. The other part of my Bill proposes a register of GPs trained in cannabis-based medicine, who could prescribe cannabis-based medicines for certain conditions.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“It has gone on for too long and we need to address it. I suspect some colleagues will speak sympathetically but say that this Bill is not the solution; if they do, I hope they will set out what they think is the way forward and the solution. I am happy to support them if they do, because I just want to find a way forward. My Bill proposes two good ways forward, particularly for the families of children with childhood epilepsy—whose lives sometimes depend on getting these medicines—but also for the many people who benefit from cannabis-based medicines and are denied them by a combination of bureaucracy and inertia. If people are not happy with my Bill and are not prepared to support it, the question must be: if not this, what?”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗
“As I say, we could establish a patient reported outcome measure study, a managed access programme—as happened with Orkambi, the cystic fibrosis medicine—or a compassionate access scheme like the one that currently operates in Northern Ireland and is open to a wider cohort than just children with epilepsy. There are, then, a number of ways in which the Government could help in the short term and in the longer term. The Bill proposes just two modest measures that might make a difference in due course. If the Government are not prepared to accept the proposals in the Bill, what is their solution? People are in pain and unable to access through the NHS the medicines that in some cases are keeping them alive. We cannot allow this situation to go on because we collectively fail to overcome the barriers.”
House of Commons10 December 2021Contains Parliamentary information licensed under the Open Parliament Licence v3.0Source ↗