I beg to move,
That this House
reaffirms its welcome for the change in the law that allows access to medical cannabis under prescription, but notes that only a handful of prescriptions for whole-plant-extract medical cannabis have been issued on the NHS, which has left a significant number of patients, many of whom are children with intractable epilepsy, with no access to medical cannabis and experiencing severe distress;
and calls on the Government immediately to act to ensure that medical cannabis is available to appropriate patients and in particular to children suffering severe intractable epilepsy, such as Alfie Dingley whose plight and campaign did so much to secure the change in the law.
It is a real privilege to stand here and represent families from across the country, alongside colleagues from across the House who I am sure will scamper into the Chamber in all haste when they realise how fast the previous business has been dealt with. This gives us a suitable amount of time—some five hours—in which to debate this really serious matter.
What had an even more dramatic effect on Teagan’s family was that, perhaps not unexpectedly, Border Force confiscated the oil. I do not blame Border Force or the Home Office—we will go into the history of how we got to this position in a moment—who were doing their jobs However, after long conversations on the phone that evening and conversations with the Speaker, I was really pleased to be granted the urgent question.
The urgent question meant that the House could come together to ask why an oil that had been prescribed—admittedly it was prescribed abroad; nevertheless it was prescribed—should be taken from a young lady who desperately needed it because of the seizures that she suffered as a result of her epileptic condition.
The oil was taken away, and the family were promised, quite rightly, that it would be kept in a safe place and not damaged.
On the Saturday a week after the urgent question, the prescription was eventually accepted by the Department of Health and Social Care and the Home Office. I say “eventually” because there is such confusion surrounding this prescribed medical product. It is fascinating to me and even to those within the medical profession.
The first prescription was rejected, and Teagan was not allowed to have the oil back because the prescription did not mention the word “oil”. Even though the description of the product was completely accurate, it was rejected because it did not contain the word “oil”. A new prescription was issued that included the word “oil”, and the oil was released. Believe it or not, conversations then took place about who was going to pay for the transportation of that medical oil to Teagan.
I congratulate the right hon. Gentleman and my hon. Friend Tonia Antoniazzi on the work they have done on behalf of the all-party parliamentary group on medical cannabis under prescription, and on behalf of my constituent Bailey Williams and his family. His mother has written to me about today’s debate, which unfortunately she cannot attend, to say that Bailey really needs urgent access to medical cannabis because of the continuing effect that his constant seizure activity is having on him. Does the right hon. Gentleman feel as frustrated as I do that, many months after the Government first indicated that this medicine could be prescribed, he is still having to speak about it today and I am once again having to raise Bailey’s case on the Floor of the House?
I thank the hon. Gentleman for his intervention. That is what we are here for. Yes, we are frustrated and angry, but actually we are here to do something very important. The only reason the Home Office deregulated this drug and we are in this position today is that this House came together and, more importantly, because the families came together. Those families have young children—I am a father myself, like lots of colleagues in the House—and we all came together to say that the situation was fundamentally wrong. We asked why medical cannabis was illegal if we knew that it helped our children.
Am I right in my assessment that Ministers have bent over backwards and we have acted in the Chamber to ensure that these products are now available, but that the problem is in the medical profession? What more can we do now? I know that this is interfering in the medical profession, but, frankly, that is now becoming necessary.
I thank the right hon. Gentleman very much. When we heard the Home Secretary speak about this initiative, we all thought that those whose children’s lives were being ruined by fits would from now on find solace. That was not the case for those whose children were beyond help at that stage, but we thought that it would apply in the future. Given that we want it, given that the Home Secretary wants it, given that the parents want it, and given that individual doctors want to prescribe it, some group at a regional level in the Department of Health and Social Care is clearly preventing prescriptions from being issued in a way in which they can be delivered.
I will touch on many of the right hon. Gentleman’s points later in my speech. The Home Secretary was ever so helpful, as was the Health Secretary, but the Prime Minister played an absolutely diamond role, and we took Alfie Dingley and Hannah Deacon to No. 10 with the petition. I know that we are not supposed to refer to the Gallery, but they are up there watching us, and they were scuttling up the stairs very quickly.
It is vital that we have a proper debate over the next five hours, without worries about time limits. I am not fussed about whether the Government lose their business later.
In response to another intervention, the right hon. Gentleman indicated that there is a degree of resistance within the NHS and among clinicians, but does he agree that this is about more than that? This is also about the Government’s regulatory framework, which is restricting access to this medication. Many people in acute pain are resorting to opioids, which are highly addictive and potentially fatal, while being unable legally to access cannabis, which can often ease their pain.
The right hon. Gentleman and I often debate health issues. We were both shadow Health Ministers at the same time, and we agree on most things, including on the prescribed medical use of cannabis. The other area to which he was alluding is not for this debate. It is not referred to in the motion. The reason we have managed to get such huge cross-party support and support from families around the country is that we have stuck to the specific issue of prescribed medical use without going into casual use.
If I can, I will make a bit of progress, because there is plenty of time for colleagues. I am really chuffed that the Backbench Business Committee gave us this opportunity. When has the Backbench Business Committee ever had five hours for a debate on a Monday afternoon? I am simply thrilled, and I intend to use as much of that time as possible. I got a little note from the Clerks saying, “You should speak for 12 to 15 minutes, Mr Penning”—yeah, in your dreams. [Laughter.]
There is a blockage in the NHS if someone cannot pay for the prescription. There are consultants both within the NHS and outside, but if someone can pay for it in the private sector, private prescriptions are being honoured. The product is available in this country, perfectly legally, to those who can afford it, and that sticks strongly in my throat.
At the conclusion of the urgent question, although it is not in Hansard, I clearly heard Mr Speaker tell the Secretary of State for Health and Social Care that, whatever happens, we will not leave it—he was referring to me. We will go on and on about this until we get justice for these young people.
Looking beyond the small cohort of desperately ill children, there are others in the country who would clearly benefit from medical cannabis. I am not a doctor, but hundreds and hundreds of families have come to ask me whether this means they can get some help. The MS Society has sent an excellent briefing to colleagues today, and the Brain Tumour Charity and many others have also provided briefings.
Constituents come to my surgery, and I tell them that we need to make sure that their specialists, the experts in their area, are saying that they need medicinal cannabis, and then we can fight their corner. We have such specialists in the sector now who are saying that children and young people with epilepsy—my constituent has just turned 18, so their mum will want me to talk about post-18, too—get a tangible benefit from treating their seizures with these prescriptions, prescribed by a suitable specialist.
We know exactly what are in those pharmaceuticals, yet we still have a crazy situation in which hospitals are telling parents that if they bring these products on to a ward when their child is ill, as part of their ongoing medication, social services will be called to look into what they are doing with their family—for a product prescribed by a consultant.
My constituent has just turned 18. When I wrote on behalf of the family to her GP and the clinical commissioning group, which was blocking the prescription, they said, “We are not interested in homeopathic products.” What on earth is going on inside the medical profession in this country? If they do not know what it is, they should go and ask someone before they write stupid letters back to people and break their hearts. I had to send the letter on.
We should look carefully at what we can do to help. It is not for any politician in this House who is not suitably qualified to say to anybody that they deserve to have this product. What we must do is break down the blockages—that is what the Secretary of State alluded to in his answer to the UQ—and find out the reason for them.
My right hon. Friend and I share a passion for this subject. Does he agree that the absurdity lying at the heart of it is that heroin is legally prescribed as morphine, which has been well understood for many years, but that a medical prejudice kicks in when using cannabis for medical purposes? Does that not highlight that there is an inconsistency that needs to be addressed—and addressed quickly?
I completely agree with my hon. Friend. I have been referring to Teagan, and he is her MP. As he knows, she got her medication seven days late, and I am convinced that she would not have got it if we had not secured the urgent question, which is why such debates are important.
I used to be a Minister, and I always panicked about UQs. I always asked, “Why don’t we just do a statement? It is a damn sight easier, and we can control the agenda going forward.” The business managers did not always agree with me on that point.
I might be wrong, but as far as I am aware from our investigations the only NHS prescription that has been issued was through the Home Office. Alfie Dingley got his medication through the panel the Home Secretary set up with the expert group in the Home Office. As far as I am aware, since we changed the law in November no NHS prescription has been honoured. We have had trusts clearly threatening consultants not to do this and we have had their professional bodies do the same—I have seen some of the correspondence. As I alluded to earlier, families have been threatened with social services for bringing the product into the hospital where their child was being treated, even though this was a prescribed drug that is perfectly legal in this country today.
The real issue is: why can only those who have the money, those who have a donor and those who have crowdfunded, or, as in the case of my constituents, those to whom one of the manufacturers has given it for free—there is no way in the world they could afford this, and I thank the manufacturer for doing that, particularly for the family—get this? In the country that is so proud of the NHS, how on earth have we got into a situation where those who are poor do not get it?
I agree with the points the right hon. Gentleman is making, but the fact that the one prescription that has been issued has been through the Home Office raises an important point: the Home Office should have nothing to do with a health issue and this should be transferred, without delay, by the Government to the Department of Health and Social Care?
To be fair, it has been, and that was before we changed the law in November. The Home Office set up a panel while we looked at the changes of the law. This does not really matter, but a Health Minister is at the Dispatch Box today and a Health Secretary was there for the urgent question, so this is clearly sitting in that Department, but the connotations are still there in respect of, for instance, bringing this into the country—
I understand that point, but this drug has been moved out of its category into the Department of Health and Social Care and it can be prescribed. The issue is not prescription. Even though there were a limited amount of private prescriptions, they are being issued. I thank the consultants who have met me and my colleagues from across the House who have been campaigning on this. They are willing to do this. As far as I can work out, the blockage is that this was moved too fast to help the families whom we wanted to help; the Department of Health and Social Care and the Home Office were not ready.
That fascinates me, because four and a half years ago— it is that long since I have been a Minister—I stood in Westminster Hall as the Minister responsible for drug policy and said then that the Government were minded to allow the medical use of cannabis under prescription. Do they not read our debates? Do they not listen to what Ministers have to say? I do not know whether they thought I was having a flier and as a Minister of State was just doing this because I felt like it on that day. But the then Home Secretary is now the Prime Minister, and of course I did it with her permission.
What did Ministers do after the right hon. Gentleman made that point in Westminster Hall? He says that that was four years ago. Why did it take until last year for the Government to do anything?
You should have seen the reaction of some of my civil servants when I got back to the Department after making that comment in Westminster Hall! You would understand then why this went exactly nowhere, even though I pushed and cajoled. Sadly, or fortunately, I was moved to the Ministry of Defence after the 2017 election.
So why are we here today? Why have colleagues come into the Chamber, which was completely empty 10 or 15 minutes ago, when they could probably go, as I do not think there is going to be a vote? I say that because the Government have indicated to me that they have accepted the motion, which is votable, if we needed to do that. I have indicated to the Whips that if we needed to do this, I would push it to a vote. I do not think we need to, simply because, after listening to the debate, the Minister will realise, “Hey, we’ve got to move faster.”
Are we moving fast? No. Are we moving faster than we were? Yes, but more needs to be done. Why is that? Because young people are having massive seizures that are affecting their lives and those of their loved ones. They are affecting their families and their quality of life in this country today.
We can do something about that. We are on the journey of doing more about it, but I ask more as a father than as a politician: why do they have to find the money and go to Holland or to Canada? If they cannot find the money, they are not going to get it, unless someone donates it to them or they crowdfund. In the 21st century, why are we allowing these children to be given drugs that are not working and that were never designed for the use for which they are being given, while we have products out there that the pharmaceutical companies are producing, and we know exactly what is in them? It may not help—it may not stop those seizures—but for some people it clearly does. It is morally wrong for us to sit back and allow those children to suffer, and I have no intention of doing that.
I forgot to do so earlier, so I pay tribute to the right hon. Gentleman. We both asked some questions in the House prior to the Home Secretary’s changing his decision, and the right hon. Gentleman kind of goaded me into some of the things that I wanted to do. The right hon. Gentleman and colleagues might remember that an important debate on Europe was due to take place on the Wednesday, when Alfie Dingley and his family were going to Holland, and on the Monday I said that the right hon. Gentleman and I would go to Holland with Alfie Dingley and bring it back, and if we were arrested, so be it. I think the Government might have lost that vote on the Wednesday had we not changed the law in time. I do not think that matters; what matters is that Alfie got his medication.
On the right hon. Gentleman’s specific point, the answer is yes, if it has been brought back with a prescription. We are still in Europe and, as I understand it, European prescriptions are as good as ours—I am told they are, but who knows?—and if they have been over and brought it back with the prescription, it is seriously wrong to take that product off a young child.
Forgive me for shuffling my papers, Madam Deputy Speaker; I was not expecting to be called quite so early in the debate. I am grateful to have been called early, but the House will have to bear with me. I congratulate Sir Mike Penning and my hon. Friend Tonia Antoniazzi on securing the debate, on their brilliant campaigning on this issue and on their co-chairpersonship of the all-party group on medical cannabis. I also congratulate the campaigners—some of whom are present—who have brought this issue into the public eye over the past year and are determined to make sure that it remains there.
Like my hon. Friend, I thought that my hon. Friend Tonia Antoniazzi might have been called next, as the co-chair of the all-party group—I think that is probably what was in his mind—and I was going to intervene on her to correct my earlier intervention, because I see that my constituents Rachel and Craig, who are Bailey Williams’s parents, have managed to attend today’s debate, despite the fact that they thought they would not be able to because of a medical appointment for Bailey. This gives me the opportunity to pay tribute to them for their relentless campaigning on his behalf. It is because of people like them that we are all here this evening.
I am delighted to have given way to my hon. Friend to allow him to pay that tribute to our visitors today.
I have received two letters from a constituent of mine, who has asked me to keep his name confidential. I am happy to give it to the Minister on a confidential basis. My constituent first wrote to me on this issue last September, after the Government accepted the principle that we should be able to prescribe medical cannabis, because the aim had not been fulfilled. He wrote:
“I have a grandson who suffers from a severe form of Crohn’s disease. He is in constant pain and finds that his present regime of opiate-based pain killing has difficult side effects. He tells me that his consultant doctor is willing to prescribe the cannabis-based alternative as soon as it is permitted. My grandson has never obtained cannabis illegally and does not intend to do so.”
My constituent wrote again to me in April. Things had moved on, but this probably illustrates the problem. In the second letter, he wrote:
“The position in my family is now relatively fortunate. Left in limbo for a long time by the NHS, and enduring frequent nausea and serious debility, my grandson used his own initiative. He found a private doctor specialising in pain control, a highly respectable man, formerly an NHS consultant, who gave him a prescription for a cannabis product. This has been successful. His symptoms are under control, his general health and capacity to eat are much improved, and he is being phased back into his job, which he had been likely to lose. I am meeting the financial cost to the tune of £695 per month currently. By tightening my belt I can do it, at least for a reasonable time to come. I never spent money to better effect in my life, and I am so grateful for medical science. But some of the sufferers on the TV programme have no financial resources. And for an old Socialist like me it goes against the grain to use private medicine.”
Madam Deputy Speaker, you do not need to be an old socialist to think that this is an unacceptable situation.
The right hon. Gentleman, who set out the case very well, is certainly not an old socialist. As we heard from him, there are multiple examples of patients who want to access medical cannabis, and whose doctors want them to access it, but are not able to do so. These are patients who last year were given hope that their pain, anxiety and seizures would end, only to have their hopes dashed and frustrated.
Like many hon. Members, I have had parents contact me recently who are desperate to obtain treatment for their children. They have said to me that, if anything, the situation has got worse since the guidelines were issued and they completely fail to understand how that can be. Is that my hon. Friend’s experience? Can we convey to the Minister today that there is a powerful sense that hope was raised and has been dashed?
My hon. Friend makes a key point. Those hopes were raised. People were promised medicine but that promise has not been delivered upon. It is a source of great frustration.
I cannot quite understand how the mechanics work. If a patient gets a private prescription and they remain in this country, they get the drug, but if a patient gets a national health service prescription, it does not work. How can we have such a system? A person can go to a private doctor and to a chemist, who will provide NHS drugs but will also do a private prescription. Who is preventing them from giving the same prescription to somebody who cannot afford to pay, such as this great socialist who is paying money for his grandchild?
I am about to come to that point, which is the key question. The root of the problem is that we are not talking about an illegal prescription; these are legal prescriptions, but our NHS is unwilling or unable to make them and deliver on them. The question we need to ask today is, what can Ministers and the Government do to help to sort out the situation? What can we do? It is clearly not good enough for us to say, “Well, Parliament has legislated so we’ve done our bit. It’s now all down to the medical establishment.” The system clearly is not working.
At the root of the issue is evidence. The Government have issued a call for research on this, which is fine as far as it goes, but we need to look creatively at that because research and evidence take different forms. After writing to the Department, I received a letter from a Minister saying that cannabis is legal to be prescribed, but should only be prescribed where there is
“clear published evidence of benefit”.
That little phrase is difficult. Cannabis has been listed under schedule 1 until very recently. When a drug is in schedule 1, it is incredibly difficult to do research on it.
My right hon. Friend makes a good point.
The Minister’s letter said that cannabis should only be prescribed where there is
“clear published evidence of benefit…and need…and where established treatment options have been exhausted”.
My question to the Minister is, do we really think all those hurdles are correct? If cannabis is the best treatment for a condition, we should not have to exhaust all those other options; we should be able to trust our clinicians to prescribe in such circumstances.
The root of the problem is clinicians’ lack of confidence to prescribe. The biggest barrier is concerns over the evidence. The Government have issued a call for evidence and research, but they are insisting on randomised controlled trials, which bothers me greatly. I am really concerned about the insistence on evidence from randomised controlled trials, to the exclusion of other ways of gathering evidence. I strongly advise Ministers and others to go back and look at some of the evidence recently given to the Health and Social Care Committee by Professor Mike Barnes, who is a noted expert on this subject. He has produced a study on the evidence for the efficacy of cannabis for a variety of medical uses. There is plenty of evidence around the world for the efficacy of cannabis for medical use. However, we are not accepting that evidence because it has not been produced in randomised controlled trials.
In his evidence to the Health and Social Care Committee, Professor Barnes said that we are trying to force cannabis into a particular pharmaceutical route with regards to trials, when that is not an appropriate way to go. He said,
“cannabis is not just cannabis…Cannabis is a whole family of plants” and
“it does not lend itself very well to the standard pharmaceutical approach. It is not a single molecule that we can compare against a placebo. There are over 2,500 varieties of cannabis, each with a different structure…each with subtle differences.
He told the Committee that each variety interacts with the others differently. So which one of those varieties do we pick for our randomised controlled trial for a standard pharma model?
Professor Barnes said that we need to take a range of other evidence into account, including anecdotal evidence. When there are tens of thousands of anecdotes that build an evidence base, there is substantial anecdotal evidence for the efficacy of cannabis for medical approaches around the world.
First, is it not also the case that we are talking not just about therapeutic uses, but about pain control? There are many conditions where pain control is actually the most important use of a medication. Secondly, may I add my recognition of the work done on this issue by the former Member for Newport West?
Yes, what is the phrase about standing on the shoulders of giants? I think that we all admire the work on this issue carried out by Paul Flynn over many years.
I do not understand why the Government will not, at the same time as calling for randomised controlled trails, also look at observational trials, whereby people can actually take the medicine they need and we can see how effective it is. We need an audit of those already using the medicine to see what is happening to them. There is nothing wrong with randomised controlled trials, but the complexity of cannabis as a product makes them very difficult to carry out. We can have them, but there are lots of other ways in which we can gather evidence that will enable us to move forward.
Is it not the case that we have been flexible on trials with other diseases and drugs? I think particularly of the flexibility on HIV after campaigners fought to get the drugs to people who were terminal before trials had finished because there was an understanding that the harm of the disease was far greater than any side effects could possibly be. That is how we should be treating this issue as well. We understand that the risk is relatively low, although there might be some, but the potential gain is rather great.
My hon. Friend makes an excellent point. Yes, there may be risks, but we should look at the risks of some of the other treatments that people are using. Opiate treatments are much more risky than cannabis.
We need to find another way forward. We need to take into account the different types of evidence. We need, really, a bespoke medical response to this. I ask the Minister, how can we use the different types of evidence to get an evidence base that will satisfy Government and satisfy clinicians? How can we use, for example, the Access to Medical Treatments (Innovation) Act 2016? We also need a bespoke regulatory response. The question for the Minister is, why not? Other countries have done this, such as the Netherlands, Germany and Canada. They all treat cannabis differently from other products and other treatments. Holland has set up an office for medical cannabis to deal with the complexity of the issue and I do not see why we cannot do something similar.
To follow up on the excellent point made by my hon. Friend Lloyd Russell-Moyle, in many of these instances, as with my constituents, we are talking about children who are suffering multiple seizures that are impacting on their mobility, weight and muscle tone through muscle wastage, and this is putting their lives at risk. Is it not therefore quite strange that the balance of risk does not seem to be taken into account when considering prescribing this treatment?
That is absolutely right. There is almost an irrational fear about the risk of cannabis compared with the risk of some what we might call more conventional treatments that people are already using.
I thank my hon. Friend for giving way again; I am not going to speak in the debate. Is it not true that in all the evidence that has been sent to us by parents, no one has written to say, “I’ve used the drug and it’s made me worse”? All the evidence shows that it either has no effect or leads to a radical improvement.
My right hon. Friend makes an excellent point. He is absolutely right. I am not aware of any evidence of the product making a condition worse. People have been using cannabis for thousands of years. If these worries about side effects were really justified, I think we would probably have seen them by now.
The hon. Gentleman has touched on a very important point. Because we are talking about pharmaceutical prescription drugs, the risk has been relatively alleviated. There is evidence of people using cannabis in a casual way that does have an adverse neurological effect. That is why this whole debate and campaign had to be separated from that so that it is about prescribed use. There is a separate debate to do with casual use. He is absolutely right—people have used it for thousands of years. Some people think that is correct and other people do not. For me, it is about knowing exactly what is in the product that is being given to the patient.
The right hon. Gentleman is absolutely right. That points to the issue about where we get the product from. The problems, allegedly linked to increased episodes of psychosis, are from high-THC street cannabis, which is not what we mean when we talk about medical cannabis products. As I said, there are lots of different types of cannabis products. They are very often CBD-based, but when they contain THC—the psychoactive element—it is a much, much smaller amount than in street cannabis. It is like comparing apples and pears. He makes a really important point.
We need to look at how we can learn from evidence in countries such as the Netherlands, Germany and Canada, as well as countries that have successfully introduced medical cannabis regimes, such as Australia and Denmark. What work are the Government doing to learn from the experience of those jurisdictions? There are currently at least 138 medical cannabis trials worldwide. We need to take into account that global evidence.
I would like to ask the Minister a number of questions. Why can clinicians make individual decisions on certain conditions but not others? For example, clinicians can make individual decisions on a case-by-case basis on Crohn’s disease, which my constituent’s grandson suffers from, but not on some other conditions.
We need a scoping exercise to look at how we can enable patients to get this medicine now. There are estimated to be something like 3 million cannabis users in the UK, with around 1 million of those using it for medical purposes. Those figures may be high but, whichever figures we look at, there are hundreds of thousands of people using cannabis to alleviate pain or help with a medical condition. At the moment, they get their product from the street—from the illegal trade. That is not good for them or for society. That is the key point. People are already using cannabis for medical reasons and getting it from illegal suppliers.
I thank the hon. Gentleman for giving way; he is making an excellent speech. On that point, I had a visit to my constituency surgery from one of our veterans, who had incurred an injury during his service. He was in chronic pain and felt that cannabis alleviated that, but he did not wish to buy it; he wished it to be prescribed and for Ministers to look at the research and studies, to ensure that veterans who need that assistance can have it.
That is not an unusual case. There are lots of people who want to use medical cannabis and do not want to buy it from the street or go to Holland to import cannabis products, and they are frustrated.
I will wind up, because I have been speaking for longer than I intended. On the funding issue, there are cases of clinicians being willing to prescribe but being blocked by trusts or CCGs. What is the Minister’s understanding of how many cases there are where funding is the issue, rather than prescription? Even where clinicians are willing to prescribe and there is new thinking, CCGs do not have budget lines for some of these products, so the reluctance is understandable. I am interested to know whether the Minister has any information on that.
It might cost more for the NHS to supply more medical cannabis prescriptions, but we have to compare that with the reduction in other costs. The estimate is that opioid costs would be 25% lower, and there would be fewer hospital admissions. Professor Mike Barnes said in his evidence to the Select Committee that we could probably introduce medical cannabis in this country on the NHS at no net cost, when we take into account the reduced costs elsewhere.
Our system is clearly too restrictive. It is not working. We need creative thinking and flexibility from the Government, and we need them to look at the different types of evidence from around the world. There are people in this country who, if they were living in Holland, Australia or Canada, would be able to get on with their lives, get their cannabis products legally and not have the worries of the campaigners in our Gallery today about them or their children and relatives having to go through chronic pain or the episodes of epilepsy that we have seen in young patients over the last year.
We all want to make some progress and are desperately frustrated that we are not able to get anywhere. I refer the Minister to the evidence given by Professor Mike Barnes. We need to look at other types of evidence to inform ourselves of a way to deliver the products that our patients need into their hands.
The right hon. Gentleman says Paul Flynn is watching us, and I have every confidence that he is. I say on behalf of the whole House that we remember him fondly.
It is of course a pleasure to follow Jeff Smith, my fellow co-chair of the all-party group on drug policy reform. He and I followed the hon. Member for Brighton, Pavilion (Caroline Lucas) and of course Paul Flynn, who were our predecessors as co-chairs. Madam Deputy Speaker, you have quite rightly made the point about Paul Flynn’s incessant campaigning on this issue. Tragically, for four decades in this House, he was shouting from the outside at an establishment that chose not to listen.
I am determined, in the remainder of my time in Parliament, to devote myself—as my priority issue, apart from all the things that affect Reigate and the nation—to drug policy reform. Obtaining the benefit for British patients of medicine from cannabis is an enormous potential public good. I draw the attention of the House to my entry in the Register of Members’ Financial Interests.
I welcome the Minister to her place. Her colleague Baroness Blackwood owns this issue at junior ministerial level in her Department. However, it is critically important that Health Ministers understand the potential benefit as this medicine from cannabis is developed and the potential economic benefit for the United Kingdom if we take a leading place in this industry. We have the opportunity to do so because we already do take such a place.
The Minister will be aware of the difficulties that the Home Office had when it managed this issue. I congratulate my right hon. Friend Sir Mike Penning on setting up the all-party group on medical cannabis under prescription, and him and Tonia Antoniazzi on their leadership on this issue.
The first urgent question on this issue was asked about Alfie Dingley by me, and my right hon. Friend, who was sitting behind me at the time I asked it, indicated his support on this issue, and he thought he had begun to open up this issue in the Home Office. However, we had the absurdity that that urgent question was answered by the Minister for Policing and the Fire Service. He had been handed the responsibility at 24 hours’ notice from the Drugs Minister, the Under-Secretary of State for the Home Department, Victoria Atkins, not because she had any particular interest in drugs from a health perspective—obviously, the Home Office’s responsibilities include protecting the public—but because her husband is associated with British Sugar. It supplies the cannabis for a great potential British success story in the form of GW Pharmaceuticals, which is one of the global leaders in producing medicinal cannabis—just not for the British people. That is something we need to change.
I want to put this issue in its global perspective and its historical perspective. Unless we understand why there is a such a lack of understanding about this issue, and why we are so behind in the research on medical cannabis and why the medical profession is so intimidated by it, I do not think we will get the necessary pressure from the Minister and her colleagues to continue to push for the necessary advance in this area.
The reason we are so far behind lies in racist American policing of the 1950s: frankly, because African-Americans smoked this stuff, it was seen as ghastly and very dangerous. Therefore, in total disregard of the scientific evidence, cannabis was listed in schedule 1 to the 1961 UN convention, which has made it extremely difficult to research its medicinal benefits. The irony is that we have had medicines derived from opiates for an extremely long time—they are standard medical products—yet medicines derived from cannabis were put beyond the bounds of research.
GW Pharmaceuticals owes its leadership in this area to a licence issued by Lord Boateng, when he was the Minister responsible for drugs policy in the late 1990s, that allowed it in exceptional circumstances to conduct research into medical cannabis. That decision was followed by £1 billion of investment in GW Pharmaceuticals. I want the Minister to understand that it is not only GW Pharmaceuticals but a number of billion-dollar companies in North America, particularly in Canada but also in the United States, that are now investing in this area. There is a tidal wave of investor money coming into the medical cannabis business and, to an extent, the recreational cannabis business—obviously we must focus on the former. We need to ask ourselves why so many people are choosing to invest so much money in the potential of this product.
When the hon. Member for Manchester, Withington and I became co-chairs of the all-party parliamentary group for drug policy reform, our third co-chair Baroness Meacher—I pay tribute to the work that she has done to reform this area—emphasised the need to focus our efforts on securing a legal change on medicinal cannabis. In 2016, the all-party parliamentary group commissioned a report from Professor Mike Barnes—we have already heard about his research in this debate—to identify which conditions medicines derived from cannabis had been established to a medical standard to help treat.
By 2016, it was already established globally, to the highest possible medical standards, that such medicines could be used to help treat epilepsy in children and spasticity associated with MS and that they could be used as an antiemetic for those undergoing chemotherapy. However, I want to emphasise that their potential application is very much wider. The problem is that the scientific research base is in its infancy, because we put in place stupid regulations that were driven by the racism of 1950s American law enforcement, which is why cannabis was listed in schedule 1 to the 1961 convention.
The Minister will know that the National Institute for Health and Care Excellence guidelines will focus on four indications: chronic pain, multiple sclerosis, treatment-resistant epilepsy, and nausea and vomiting due to chemotherapy. However, there is substantial evidence—enough to excite investors around the world to invest billions of dollars in the potential of this medicine—that cannabis or cannabinoids will be effective in improving chronic pain in adults, chemotherapy-induced nausea, short-term sleep outcomes in individuals with deep sleep disturbance, clinician-measured spasticity symptoms associated with MS, symptoms of Tourette’s syndrome, anxiety symptoms in individuals with social anxiety disorders and symptoms of post-traumatic stress disorder. I hope that the Minister will understand that, if we can advance the science satisfactorily in relation to anxiety and depression, this is of potentially vast application.
We have to understand the range of interests arrayed against the development of medicines in this area. We should consider how policy has been developed in both North America and Germany, and indeed here, because the development has come not from the medical profession or the pharmaceutical industry but from outside. In the United States, those states that have approved the use of medical cannabis usually started the process through a referendum that then imposed the answer on the state’s legislature. Twelve of the 25 states that have medical cannabis have now moved on and established a market for cannabis for recreational adult use. An important development is that Canada, which has had medical cannabis for some time, last year introduced a market for legally supplied cannabis for recreational adult use.
I quite understand the political need, reflected in the establishment of the all-party parliamentary group on medical cannabis under prescription by my right hon. Friend the Member for Hemel Hempstead and the hon. Member for Gower, to differentiate between medicinal and recreational adult use. We must of course focus on the medicine first. There is a separate discussion to be had about the important criminal justice, societal and public health benefits that would come from being able to protect the public and children by having a legally supplied and properly regulated and licensed market. What has been absent from the wider political debate about this to date is a proper consideration of evidence. We are 50 years behind on the potential benefit to the public because we have been unable to get the evidence, and that is a result of the policy imposed through the 1961 convention.
I want to draw attention to one potential application relating to chronic pain. The United States is now coping with an opioid epidemic. Last year, 63,000 Americans died of an opiate overdose that started in the doctor’s surgery. These were not junkies on the streets; they were people who went to their doctor to get treated for chronic pain. Many of them were prescribed OxyContin, courtesy of Purdue Pharma, in circumstances that are now subject to a class action. When the state of Arizona held a referendum on legalising cannabis, the result was on a knife edge and it was not clear which side would win. I am advised that right at the end of the campaign a substantial slug of money was put in to achieve a no vote. Nobody knew at the time where the money had come from, but my understanding is that it actually came from a business associated with the rehabilitation of opiate addicts, which is truly shocking. To prevent cannabis-based medicines having an opportunity to replace the much more dangerous opiate-based medicines, which have contributed to this terrible level of dependency on a medicine that is profoundly dangerous if taken incorrectly, cannabis had to be kept out of the business.
What I want to say to the Minister is that I am anxious for the Department of Health and Social Care, in taking this issue forward, to clearly understand where all the interests are here, and, if one begins to roll this forward in the years to come with regard to the potential application, to understand what opportunities there are for the United Kingdom as a provider of medicine from cannabis. GW Pharma ought to be reinforced by other companies supplying pharmaceutical grade cannabis-derived medicinal products to people. If the conditions I listed earlier are anything to go by, this will be a multibillion dollar-industry, particularly if we can get a decent slug of the global market.
This is not just about the economic effect, however. This is about the opportunity costs of people continuing to be prescribed opiates when they could be prescribed a cannabis-based medicine. It is about the opportunity costs of people self-medicating with alcohol to deal with the aches and pains of old age, rather than understanding the benefits they could get from cannabis. We are now at the stage—the Minister will have seen the report about people who have a medical condition for which they have a diagnosis who now cannot get medical cannabis—where people are now growing their own. In certain circumstances, they are being arrested for growing their own medicine. Our policy is in a mess. It will need real drive from Ministers to get a grip of all the regulators and the medical, pharmaceutical and patient interests to keep pushing for sensible reform.
I ask the Minister and her team to look around the world at the jurisdictions leading on this issue. Look at what is happening in North America, particularly Canada and New York state, and in Germany. Germany has moved pretty rapidly following a legal action by two cannabis growers producing their own medicine. The German state lost that legal action and it now enables them to grow their own cannabis for medicine, saying that what these people need is pharmaceutical grade medicine from cannabis. Two years on, I think 80,000 prescriptions have been written in Germany for people to get medicine from cannabis. We can move relatively quickly if we have the will.
If we do not have the will, we will see the continuing misery of families with epileptic children who are chronically ill. It is quite right that End Our Pain and the all-party group have focused on those families, led so brilliantly by the Deacon family, with Alfie, and Charlotte Caldwell, with her son Billy. They are the ones who have pushed this over the line. No politician can turn around to mothers and families in circumstances where they have obtained treatment with medicine derived from cannabis and faced up to the cruelty, on their return to the United Kingdom, of that medicine being taken away from them. Billy Caldwell’s case was the one that drove the Home Secretary over the line, issuing a special licence and beginning the process of reform in this area.
I cannot find anyone in this House who does not accept the principle that if we can have medicine from the opium poppy then surely we can have medicine from a cannabis plant. Find me evidence of someone who has died of a cannabis overdose. I am told there is not any. Of course, people have died in certain circumstances relating to mental conditions associated with very heavy use, particularly by young people, of the kind of dreadful stuff sold on our streets by the criminal supply chain. But we have chosen, by the laws we have passed, to put that business in the hands of criminals who are selling the strongest and most dangerous stuff to our children. Trading Standards is not going around measuring it or checking that consumers are over the age of 18 when they purchase it. That is why it is easier for our kids to get this dangerous form of cannabis than alcohol.
We need to get to grips with an awful lot of reform in this area, but the public benefit from the United Kingdom pushing on with the science and supporting research could be huge. We in this House must remain engaged, and Ministers must really push and lead on this. My fellow co-chair of the all-party group on drug policy reform, the hon. Member for Manchester, Withington, made a very important point. There will have to be a bespoke arrangement to regulate and license the system. There is an endocannabinoid system in all animals. That is not taught at medical school. That is not currently part of standard medical training or assessment, but it would appear to be a reason why this stuff works at a common sense level. It is why, among all the people we represent, there is the knowledge that this stuff does work. That is why hundreds of thousands of people are using it to self-medicate for the conditions from which they suffer. We have to bring those people into the legal framework, so they can access the medicines that will make their lives very much easier. Many of the diseases and conditions likely to be treated by medicinal cannabis are the diseases of ageing. It would be infinitely better if people can use a safe medicine such as cannabis, rather than dangerous medicines such as opiates or legal alcohol.
I ask the Minister to push her colleagues to ensure that we do not simply follow down a pharmaceutical path that just assesses medicine as a molecule with a particular individual effect on a particular individual condition. That will not work in respect of medicines derived from cannabis. We have heard the reasons: the complexity of a plant-based medicine that has many thousands of different variants once one starts spinning them out. There should not be a choice between randomised control trials and observational trials. We need to do both. The opportunity for the United Kingdom and the people we represent—both economically in terms of a highly successful business and in improving public health and reducing the danger of opiate use and so on—is there for us to grasp. That is why investors have got it. They understand the opportunities for innovation and investment with real money in this area.
I urge my hon. Friend the Minister, now that the policy lead is in her Department and not the Home Office, to get the rest of the licencing arrangements off the Home Office and get them into a state where we advance public health, advance the economic interests of the United Kingdom and make a huge difference to public health in the UK, making people safer and healthier, and, ultimately, providing much greater value for money than the alternative treatments that people are using at the moment.
It is an honour to follow Crispin Blunt, who is so impassioned—that was evident in his speech—and has done so much work on this issue. I think everyone would pay tribute to what he has done.
I congratulate Sir Mike Penning and my hon. Friend Tonia Antoniazzi on securing the debate and on the work they have done, alongside the End Our Pain campaign, to highlight the importance and urgency of this issue. It is heartbreaking to hear the stories of families who are trying to access medical cannabis, and especially parents whose children are so poorly. I am sure we all pay tribute to them for their persistence in standing up for their children.
I pay tribute to Sir Mike Penning. For a long time, he has been campaigning very strongly on this issue—in fact, we met some families he brought down to the House of Commons last year—as, of course, has Crispin Blunt.
If my hon. Friend Mary Glindon watched the news over the weekend, she will have seen a family who had to go to Holland and pay over £1,000 to get the medical relief that their kids need through medical cannabis. The question therefore is: why can we not do the same in this country? Why are we being so slow? A lot of kids are suffering, and some could go into a fit and die if we are not very careful. Does she not agree that the Government have to treat this with urgency?
I certainly would agree, and that is the case that we are all trying to make today.
I want to highlight the situation for my adult constituent, Lara Smith, who is known for courageously campaigning for the medical use of cannabis by highlighting the problems that she has faced in recent years to access the medicine Bedrocan. Lara is a wife and the mother of three children. She was a paediatric nurse and a county fencing coach before her health deteriorated because of cervical and lumber spondylosis. Over 20 years, she has had 35 different medications as well as a number of operations for her condition. Unfortunately, she has been left with permanent nerve damage, limited mobility and a constant annoying and debilitating tremor in her right hand. Her quality of life has been completely impaired, not just because of her medical condition but particularly because of the drugs that she has been prescribed over the years. This has meant that Lara was not able to be the full-time mother that she wanted to be to her daughters and son.
Fortunately, Lara’s pain management consultant in the north-east prescribed her the drug Bedrocan, and the transformation was such that she was able to come off all her other medications. Her young family said that they felt they had their mam back. The downside is that Lara can access the drug only by travelling to a Dutch pharmacy to collect it. Her arduous journey was shown just last week on “The One Show”—I hope that if people have not seen it, they may be able to on catch-up. She makes the journey every three months and has to notify full details of her prescription and travel to the Border Force. The costs of the medication and travel are expensive for her family, but it is a sacrifice that they have been making for over four years. The changes to the law that were made last November have not gone any way to making it easier for Lara to get her medication.
“there should be no barriers to patients getting access to the appropriately prescribed medicine. The Department of Health and Social Care…has been working closely with suppliers and NHS procurement pharmacists to ensure that prescribed CBPM are available when needed.”
But that has not been the case for Lara and many other people, as we have heard tonight.
Lara’s private prescription cannot be dispensed by NHS pharmacists. Her consultant has been unsuccessful in obtaining an individual funding request, which Lara is very disappointed about. That was because the hospital trust follows the Royal College of Anaesthetists guidelines, which do not advocate the use of cannabinoids, citing a lack of evidence for effective pain relief, so all the while there has been no progress yet for Lara. Lara did approach an independent pharmacy to see whether it could get access to the drugs and bring them here to dispense them, but the licence fee would cost thousands and the cost would be borne by Lara. It is just beyond her reach.
The current state of affairs remains frustrating for Lara and all the adults and children who need these drugs. I do not know how many more trips Lara can make to Holland—not just on a financial basis, but because of her health—and I am worried about her. The process that the Government have put in place is too protracted. All I can say is that I hope the Minister will heed the words of the motion and particularly the very sensible proposals from the all-party group. This is a case of urgent need. We cannot delay any longer. Please listen, Minister, and please give some positive feedback this evening.
I congratulate my right hon. Friend Sir Mike Penning and Tonia Antoniazzi on securing this timely debate. Let me start by picking up on something that my hon. Friend Crispin Blunt mentioned: all we are talking about is medicinal cannabis. We are not talking about making cannabis available for general recreational use. I am sure that there are Members of the House who would have an opinion on that, and we could have a full debate on it, but we are talking only about use for medicinal purposes. The wording of the motion is very important. When I read it, I saw that it stressed the practicalities of getting cannabis medicines prescribed. It is not about the general issue—we had the debate on that and the Home Secretary reached his decision—but about the practicality of getting some sort of result.
I realise that this is not easy for the medical profession and that the Government have initiated a review of the barriers to clinically appropriate prescribing. That is a very important review to undertake. I am aware that the National Institute for Health Research is going to participate in the review, which is a positive step, and I will set out what I think are a couple of the barriers that prevent prescribing
What we are really waiting for is some NICE guidelines. I understand that they are coming, but they need to be brought along pretty quickly. We cannot wait for them forever, nor can the children who are suffering.
The hon. Gentleman is making an excellent point and an excellent speech, which relates to the practicalities for children in my constituency such as Cole Thomson. His mother, Lisa Quarrell, has been trying to get medicinal cannabis for him for some time. Not only does she have to battle his absolutely debilitating epileptic illness, which gives him multiple seizures every day, and to see the deterioration each day in his condition, but she has to battle the medical system, battle with financial costs and battle the Government as they take one step forward and two steps back, giving hope and then taking it away. It is too much and too traumatic for any family in that situation to cope with.
I thank the hon. Lady for her excellent intervention, and I agree with much of what she said.
One of the main barriers that I see is the simple question of who is allowed to prescribe. The General Medical Council holds a list—a specialist register—of specialist doctors who are allowed to prescribe. Why do we have a specialist list, and why can only those on that list prescribe? Is it because people are nervous about their careers or other things? Why do we limit the number of doctors who can prescribe in this way? I have read claims that something like 110 patients have been prescribed the medicine, but from what has been said in this debate, I understand that only one has received it.
My hon. Friend gives me a great opportunity to correct Hansard—I have received the message that there are two, both prior to the
I will come to the point about training in a moment, if my hon. Friend will be patient, but he makes a valid point.
I appreciate that we have to go carefully, in view of the harm that the unrestricted use of cannabis might do, but the number of people who have received their drugs is a mere pinprick on the surface of those who need them. I am not surprised people go abroad to get their drugs, because it is the only source.
A person can only go abroad if someone is paying for it—if they have reserves or a benefactor, if Grandma or Grandad is paying. If they do not have those things and are relying on the NHS, nul points—they don’t get it.
I accept that point. In cases of children who need cannabis oil, I am aware of it being crowdfunded, which can be a valuable way of proceeding, but it seems a complete nonsense in a country that is proud of its NHS that people should have to go into the public arena to crowdfund a drug.
I have some questions about this short list that the GMC maintains of doctors who can prescribe medical cannabis. How accessible are these doctors, and what is the waiting time to see one? These are practical barriers to people getting the drugs they need.
A young girl in my constituency—her name is not important—has intractable epilepsy and there is a great hope that medicinal cannabis would improve the quality of her life. Many women who suffer the sort of pain and discomfort she suffers during her menstrual cycle take birth control pills, which eases the pain considerably, but she cannot do that because it reduces the efficacy of her epilepsy medication and leads to a radical increase in the number of serious fits. For Hannah—that is her name—her epilepsy is life-threatening, as she is in a high-risk group of epilepsy sufferers who could experience sudden unexpected death in epilepsy syndrome, and we ought to think about how we can make it easier for her to obtain these drugs and so make her life easier. I mention that because to make these points we need to bring this debate back to examples of real constituents.
My second point is that raised by my hon. Friend Michael Fabricant about the availability of guidance and training. In respect of both, there is a great lack of information, and it is not just us who lack information; so does the medical profession. We should do all we can to increase doctors’ knowledge and awareness so that, among other things, we can broaden out that list and GPs and family doctors can have the information they need to make decisions. I have no problem with this being a clinical decision rather than a political decision.
We are where we are only because a politician, when faced with the inhuman cruelty of taking away from two children medicine obtained overseas when they returned to the UK, in the end refused to do so and issued a special licence. If this medicine is outside the scope of conventional medicine and the conventional assessment of molecular-based medicines, something will have to give if we are to get the benefit.
I agree with my hon. Friend. The in-principle decision has been taken and the practical decisions now have to be taken by clinicians who are willing and fully trained to prescribe. The press releases and parliamentary answers are full of talk about finding the limit to the use of cannabis as a medicine. I listened to an exchange—I cannot remember who it was with—on its use to treat pancreatic cancer. From memory, I think the Minister gave a rather mealy-mouthed response. We need to think about extending the limits to other diseases.
In conclusion, I go back to where I started and congratulate my right hon. Friend the Member for Hemel Hempstead on securing this debate, but the matter will not rest here. I do not think this will be the last time we have this debate. I hope we see some progress soon.
I thank my co-chair of the all-party group on medical cannabis under prescription, Sir Mike Penning, for securing this Back-Bench debate and the Backbench Business Committee for granting it on the Floor of the House. It is an honour to follow John Howell.
I am committed to campaigning for medical cannabis under prescription not only for my constituents but for everyone in the UK who would benefit from access to whole-plant medical cannabis. Whole-plant cannabis contains CBD and THC. It is the interaction of both extracts taken together that provides significant relief from symptoms such as seizures, because it provides the entourage effect. The two extracts interact with the human body and produce a stronger influence than any one component alone.
We must remember the number of desperate families passed from pillar to post and blocked at every turn. Is the Minister going to sit back and watch them continue to suffer? We have families watching us from the Gallery, and their turn is now.
The hon. Lady makes a good point. I first became involved in this campaign in 2002 when I met my constituent, the late Biz Ivol, who had severe advanced multiple sclerosis and who told me that the pain she suffered was like having somebody draw barbed wire through her spine. For the last 17 years, we could have been exploring all the issues being ventilated tonight, but we have not. Does that not illustrate the urgency?
I have a constituent who is suffering from very advanced multiple sclerosis. She has been unable to obtain the medication she needs, and her husband is growing small amounts of cannabis to relieve her pain. However, it is not just her who is suffering. Staffordshire police do not want to act, although technically the family is breaking the law. That is an impossible position, is it not? It really is up to the Department of Health and Social Care to find ways in which cannabis can be prescribed more widely and more quickly.
The hon. Gentleman is absolutely spot on. The issue of the law and people who are using cannabis as a medicine to relieve their pain is especially relevant to those with multiple sclerosis.
My very good friend Chris Reilly has progressive MS, and this week he had to go to hospital. His wife Beth called an ambulance, and it took an hour for the paramedics to be able to give him the correct amount of pain relief so that he could be taken to hospital. He is in touch with me all the time. When I was selected as the parliamentary candidate for Gower, he was the first person to contact me and tell me that this was a subject very close to his heart, and that he wanted me to become involved with it. I thank him for that, but it makes me cry that I cannot help him and cannot provide the medical cannabis for him. I know that I am standing here and making comments as a politician, and that I am not a medical expert, but we all know that when our constituents and their families visit our surgeries we share their pain and their tears because they cannot access something that would, quite simply, make their lives a lot better.
The hon. Lady is being very generous in giving way, and I totally agree with what she is saying. Is it not the case—cruel as it may seem to say this in the Chamber—that for those who are is suffering from advanced multiple sclerosis, there can be only one end to it? Is it not therefore cruel in the extreme that when something could mitigate the pain and the discomfort and is not going to do any more harm to the patient because there is no cure for advanced multiple sclerosis, that palliative care cannot be administered?
I completely agree. The families of children with intractable epilepsy are in exactly the same position, as are so many other people throughout the United Kingdom. My friend Chris is a very good example of how wrong it is that people with MS or epilepsy have no access to whole plant medical cannabis. As we know, it will never be a cure for everyone, but, as Chris told me yesterday, it provides the chance of a better quality of life. That is what people want. It is what the parents of children with intractable epilepsy want. They are at the end of the road. They have tried everything from the ketogenic diet to unlicensed drugs, which make the children unreceptive and do not improve their quality of life.
I pay tribute to my co-chair of the all-party parliamentary group: without her support, we would not be here today. I feel for her constituent as well as mine. They are asking us to help, and we are doing everything we possibly can, but we are not medics and we cannot prescribe. Doctors seem happy to sign off and prescribe off-label drugs for purposes that have absolutely nothing to do with what those drugs were licensed for, but they are not willing to license medical cannabis. Does the hon. Lady not agree that that is an imbalance?
I do agree. It just does not make sense, which is infuriating, because I like to apply sense and logic to most situations, and the current situation is not logical.
Not being able to access medical cannabis leads people such as Chris and the parents of children with epilepsy to consider alternative ways of accessing cannabis, which—as has already been pointed out—is fuelling a dangerous online trade in which, for all we know, they could be buying anything. That is dangerous and wrong. Clinicians to whom I have spoken often ask parents what they have given their children in addition to over-the-counter drugs. Access to CBD alone has great health benefits that are not recognised by many in the medical profession. The right hon. Member for Hemel Hempstead has referred to its being described as homeopathy. When I say that one of my interests lies in medical cannabis, there will always be someone—even a politician—who will make the pun about wacky baccy, and it is really not appropriate. ‘
There seems to be a theoretical concern about the exposure of children to THC, but that is about recreational use; it is not about medical cannabis. Discussions about the legalisation of cannabis for recreational use and about the rescheduling of cannabis for medical use under prescription must not be conflated in the House. Let me put the position into perspective. The law changed because of one boy, Alfie Dingley, and the campaign spearheaded by his mum, the fantastic Hannah Deacon, who is in the Visitors’ Gallery today.
And Billy Caldwell, yes.
Alfie’s life has been transformed. He has been seizure-free for as long as 300 days, riding a bike and riding a horse. Hannah continues to campaign for parents who cannot gain access to medical cannabis for their children, who need the same treatment for their intractable epilepsy. The fact is that although the law has changed, the rules on access to medical cannabis are even more stringent as a result. Under the guidance provided by the British Paediatric Neurology Association, Alfie would not be eligible for his prescription, which beggars belief. The Government were aware that they were opening the floodgates by providing access for Alfie, but the push-back from certain areas of the medical profession is what is preventing any advance. We have seen that with a number of patients, and it is extremely unfair.
The medical cannabis that is being prescribed is in line with manufacturing practice, which means that it meets European standards. However, these products will have to be subjected to trials that could take three to four years, which is not acceptable to the families with whom we work at End Our Pain. It is not acceptable to the parents of Bailey Williams, who are also in the Gallery. They cannot wait any longer. They did use a CBD, and I think that they are still using it, but it is not working; it has worn off. That is why they need the THC.
These products are available, and they need to be made available to everyone now. There is currently a two-tier system. There are those who have access to medical cannabis because they have the funding, and those who do not because it is not available on the NHS. We must change that.
I pay tribute to the hon. Lady for the work she is doing. The situation is worse than that, however: we are driving a number of people into the hands of a criminal supply chain so that they can obtain their medicine, and that cannot be right.
I entirely agree, and I am very concerned about it. We have heard in the House this evening that people are growing their own cannabis, and there is a growing trade. There is an online family of people who are helping each other to obtain the most THC possible from different combinations of different plants. It is a complete industry. Why are the Government not getting a grip, and providing a proper, GMP-standard, pharmaceutical product for people?
I also want to talk about the cost, which is extraordinary. Has the Minister or anybody in her office done a cost-analysis? Alfie Dingley’s case provides a classic example: how much has he saved the NHS by not having emergency medication and not using the ambulance service to go into hospital? It seems nonsensical that we are not going down this road.
I want to talk about a couple of my constituents. Only a few weeks ago I had a visit from the parents of a 14-year-old son. My son is 14 too, so their situation struck a chord with me. Their son has intractable epilepsy. Mum has given up her job to look after him—he has a very efficient system around him. He benefits from a ketogenic diet and the next available medicine is Epidiolex. Epidiolex does not contain THC but she wants her child to be on a trial, and the trial is limited. A mum should not come to me begging for her son to be on a trial, but when I spoke to her about medical cannabis with THC she was reluctant to engage because of a fear of breaking the law and of not following the system properly. All our families are following a system. They are at the end of the road in terms of what medicine they can be given, so I want them to be given medical cannabis with THC as soon as we can.
NHS England is drafting terms of reference, and as co-chair of the APPG I appreciate its efforts. These children must have access, however; they must not be waiting three or four years. I urge NHS England to work collaboratively with the devolved nations because we need our children in Scotland, Wales and Northern Ireland to have the same benefits.
I congratulate my hon. Friend on her excellent speech and the excellent work she has been doing with the APPG. I also congratulate the End Our Pain campaign, which has done so much to raise this issue. Does my hon. Friend agree that NHS England needs to improve its guidance on intractable epilepsy and fast-track it so that children can get the THC they need?
I totally agree that a completely different approach is needed if we are to get the medicine to our families now.
It is very upsetting that families are risking getting criminal records by bringing in medical cannabis and are having to fundraise for prescriptions. I pay tribute to families that are fundraising in the public domain—to the parents and the friends, such as Craig who has cycled many, many miles up Pen y Fan recently to raise money for Bailey. I say to all those families that are raising money, “Don’t give up; there is hope, and hopefully we will be able to get you the medicine you need on prescription from the NHS.”
It would be very remiss of me to stand here and not pay tribute to the late Paul Flynn, former Member for Newport West. Paul was an absolute inspiration. I was a patron of an organisation with him and he was inspirational when I went to Birmingham to speak with him. His knowledge of and passion for medical cannabis was second to none, and I know that, as Madam Deputy Speaker mentioned, he is watching over us now and hoping we will get the breakthrough he was working so hard towards.
My hon. Friend Jeff Smith spoke of a bespoke medical response and creative thinking, and I ask the Minister to work with us: pull groups of families out of local trusts and set up an immediate observational trial with the 18 families that we have at End Our Pain; get the NHS to pay for the costs of the medicine when a private prescription has been issued until NHS prescribing is more routinely accepted; and allow the guidance from medical cannabis experts to be used. Some excellent UK experts have come together to form the UK Medical Cannabis Clinicians Society, and they have issued prescribing guidance, too. I say, “Please, work with the NHS to give clear central guidance that medical cannabis is legal and that there is an expectation that it will be prescribed as a normal unlicensed medicine when appropriate.”
It is a pleasure to follow Tonia Antoniazzi, who spoke so movingly and with such great sincerity on this important subject. I congratulate her and my right hon. Friend Sir Mike Penning on securing this debate, which is incredibly important to my constituents.
Teagan Appleby is just nine years old and lives in Aylesham. She is wheelchair-bound and can suffer up to 300 seizures a day. She was born with a rare condition, Isodicentric 15, a severe form of epilepsy. Last year, she required life-saving treatment five times in just eight days.
Teagan’s mum, Emma, who is in the Gallery this evening, has been a tireless fighter not just for little Teagan, but for the medicine that little Teagan needs. Emma has tried everything to ease Teagan’s pain. One thing she could not try was cannabis oil, despite NHS trials showing that it could dramatically reduce epileptic seizures. The alternative suggested by doctors was Teagan having risky procedures on her brain. Understandably, like any parent, Emma does not want the surgeons getting out the scalpel and starting to operate on her daughter when alternatives are available.
That is why, last year, I urged the Home Secretary to intervene in Teagan’s case, along with many others, including my right hon. Friend the Member for Hemel Hempstead, who fought on this and I welcome the fact that he did so. Last October, the Home Secretary announced that cannabis would be medically prescribed by specialist consultants, yet the reality was somewhat different. Teagan’s treatment was still delayed, first due to the restrictive guidelines drawn up by the NHS and then due to supply issues.
I have visited Emma and Teagan at their home in Aylesham. It is incredible: all of us who are parents fight for our kids, yet somehow when we see someone in Emma’s situation looking after little Teagan we cannot help but think that some people fight harder than others. No one could fight harder than Emma does for Teagan. Teagan is so charming, and it seemed to me that things had improved, but Teagan was still suffering seizures during her sleep. Emma started fighting to get the stronger, THC form of cannabis, which has been discussed this evening, approved to see if it could stop the seizures entirely. She went to mainland Europe to get it, because she could not get it here, and it was seized on her return.
The latest position is that Teagan is getting better. She now goes whole days without seizures, which was extremely rare before. She can now walk short distances. Her doctor is so pleased that he has issued a fresh prescription, yet she still cannot get it on the NHS. The fact that it is legal but unlicensed means that Emma has to submit an individual funding request to the local clinical commissioning group. It takes weeks for those panels to meet, and weeks for them to make a decision. That is why, in the meantime, Emma has to fork out thousands of pounds for bottles of cannabis oil. The price almost doubles when we add the import duties—that is, of course, when she does not have the extra hassle of having the oil seized at the border. That is also why Emma is having to consider going to Holland again to get this much-needed medicine for little Teagan. I ask the House this: should she not be supported and helped? Should she not be understood as having the compassion that every parent has for their child? Is it not wrong that she is effectively being declared by the law to be acting as some kind of drugs mule? How can that be right? I do not think that it is right. There has to be change.
All of us understand that we need to have evidence and clinical trials. We understand the need for proper processes, but none of us can understand why this is taking so long. We cannot understand why we are so bad at dealing with pain management in this country. We are just not good enough at it at all.
The hon. Gentleman is making an important and powerful speech. Is he not as frustrated as all of us here and, particularly, the families are at just how long it is taking for all this to go through and for medical cannabis to be legalised so that GPs will be allowed to prescribe it? Products such as oxycodone—OxyContin—and other opioids are totally addictive, yet they are available, at great cost. Surely the time has come for medical cannabis to be made legitimate.
The hon. Gentleman makes a powerful point, with which I wholly agree.
This is not just about speed; it is also about consistency. We can go to the local supermarket and buy ibuprofen, which people say is safe. We can buy as much as we like, yet we need a prescription for naproxen, a similar drug, because it is meant to be more dangerous. This is despite the fact that an article in the British Medical Journal in 2016 showed that, following experiments, the evidence concluded that the risk of heart problems was higher for people taking ibuprofen than for those taking naproxen, and that naproxen was less problematic and had fewer side effects than ibuprofen. Nothing has happened about this.
My hon. Friend makes a strong point about consistency. Policy on the legalisation and decriminalisation of drugs is a reserved matter, in contrast to the delivery of health and social care, which is devolved. Does he agree that there should be consistent training and delivery programmes across the United Kingdom, so that people get the same standard of access to help for themselves and their families whether they are in England, Scotland, Wales or Northern Ireland?
I completely agree. The whole House knows that my hon. Friend is a true champion of his constituency and of the Union in which we live. It is important to have consistency so that anyone can go and practise, whether they are in England, Wales, Northern Ireland or Scotland. He makes an important point about the need to ensure that level of consistency.
It is also important to have consistency in the NHS, so that when the necessary evidence on drugs is available, the NHS takes action. It could, for example, look at the issue of naproxen and ibuprofen, rather than just carrying on regardless. It says that evidence is important, so it should be doing something about that. Indeed, in America, naproxen is not a prescription drug at all. People can just go and get it in their local drug store. In the same way, the NHS will not prescribe, or make it easy to prescribe, cannabis oil, yet it is easy to get codeine. For those with a bit more pain, it is easy to get tramadol, and for those with even more pain, there is morphine as well. Those opiates are legal and easy to get on prescription, yet we seem to have a mental barrier about cannabis and cannabis oil.
It is really important that we understand the importance of pain management and take it more seriously. We need to look at what can be done to ease pain for all people with all conditions, and we need to act swiftly and consistently on the evidence and without delay. That is why it is right that we should act to “End Our Pain.” We should act to help people such as Teagan and our many other constituents who are suffering. We need to act to end that suffering and pain, and to make it easier for them to get the medicines that they need to make a difference to their lives.
I congratulate Sir Mike Penning and Tonia Antoniazzi on securing this debate, and I thank the Backbench Business Committee for managing to schedule it so that we have enough time for a reflective, open and consensual debate—[Interruption.] So far! I am really looking forward to hearing what the Minister has to say in response.
We are debating an issue whose time has come. The individual cases have come together into a campaign that shows where the consensus is beginning to lie. I want to reflect a bit on that, and to speak, as many others have done, about an individual constituency case. I also want to think a bit more about the consequences of the wider campaign.
At the beginning of the debate, some Members, including Crispin Blunt, talked about the growth of the campaign and of public awareness of this issue. Campaigns such as these can often start with what seem to be quite isolated cases. An individual comes to one of our surgeries and the Member then has the incentive to raise the issue here in the House, after which others join in, saying, “I’ve had that as well.” Then we get the urgent questions and the Back-Bench debates, and the issue becomes much more live and mainstream. Members of the public are encouraged to come forward to their MPs with their individual cases, and the broader public are encouraged to support the overall issues. We have seen this in a number of areas. I am reminded of the WASPI campaign—although that is a completely different situation—because of the way in which it snowballed as people came forward to their individual MPs with their local cases and it built into a positive campaign from there.
The policy environment on medicinal cannabis is ripe for change. We have heard today about the knowledge and experience in other countries as the different kinds of cannabis medicines have been rolled out effectively. In fact, we have heard about that happening here as well, because those people who can afford private prescriptions are feeling the benefit of these medicines. However, it is incredibly frustrating for those who, for whatever reason, cannot access the right kind of medicine privately. The whole point of the NHS is that treatment should be available free at the point of need, and that it should be blind to people’s individual financial circumstances. The progress that the Government have made has to a certain extent been welcome, but the hope that was provided when the reclassifications and the provision for prescriptions from individual doctors were announced has now been dashed.
In the spirit of this cross-party consensus, I say to the hon. Gentleman that this is not a dig. This matter is devolved in Scotland, Wales and Northern Ireland. These medicines have been prescribed privately in Northern Ireland. Progress was made there. Scotland could do this; we could do it; and Wales could do it. I know that discussions are going on within the Department, but we must not take this in isolation. This must happen across the United Kingdom. I passionately agree with devolution, but no child should suffer because one area is devolved and people are playing catch-up with the other parts of the United Kingdom.
That is fair enough, and I want to maintain the tone of consensus in the debate. The licensing and classification of drugs remains a reserved issue, and the right hon. Gentleman is right to say that the Governments have to work and move forward together. The Scottish Government have indicated their willingness to do this, and we have to make sure that we move on. Frankly, in Scotland, we are always happy to take on more responsibilities and further devolution and, if we do not see the progress that is being sought, perhaps that is what we should do.
I want to speak about a specific constituency case that I have raised in the Chamber once or twice before. My constituents Laura Murray and John Ahern came to see me for the first time in November 2017, a few months after their beautiful daughter Bláthnaid was born. She has been diagnosed with Aicardi syndrome. With only around 4,000 cases worldwide, it is incredibly rare, but the symptoms are similar to those described by others and include frequent seizures and possible visual impairment. The treatment is limited, and the medicines that she has been prescribed are incredibly powerful, coming with their own debilitating side effects. The hon. Member for Gower made a powerful point about how much money the NHS has been spending—I appreciate that some of this is devolved—on providing emergency treatment and last-minute access to expensive drugs when the parents are keen to try an alternative.
Laura and John wrote to the Secretary of State for Health and Social Care to describe the situation, saying that Bláthnaid
“suffers multiple seizures every day and night which cause her extreme distress. They cause her to scream in pain, cry tears and become highly distressed, which is very distressing for her and us as parents and for her family to witness.
Bláthnaid has been hospitalised due to the severity of her seizures, and whenever she is ill her seizures increase, and she ends up in hospital. This is no way to live for Bláthnaid, to continually suffer and have no quality of life.”
Sadly, we hear about too many similar cases. Bláthnaid’s parents are looking for access to full-extract medical cannabis and will otherwise be at their wits’ end. The situation is particularly galling because, as the wee girl gets older and becomes more aware of what is happening, things become even more frustrating and painful.
I have written to the Health Secretary, the Home Secretary and the Scottish Government’s Cabinet Secretary for Health and Sport. I want to work with people at every level. I will meet with Ministers, with the GMC and with the local health board—whoever I have to meet—to try to secure progress for this individual case, but it should not have to come to that. Almost every Member who has spoken has raised a constituency case or another specific case, which demonstrates that the overall regime has to change. Doctors having to take personal responsibility is a hurdle in several cases. I know that there is provision for second opinions on this side of the border and I want to discover how that can work in Scotland.
I hope that future decisions do not have to come down to individual interventions and that we can have a more permissive atmosphere. I appreciate the point about devolved and reserved matters, but I was a little disappointed simply to be batted to the Scottish Government by the ministerial correspondence unit after raising the issue on the Floor of the House and after including the personal testimony from my constituents. I hope for a little more engagement from the Department of Health and Social Care down here.
It is interesting that the broader campaign is called “End Our Pain” because this does go beyond any one individual case. Dozens of constituents have been in touch in support of the campaign, because they see the benefit to themselves, their families and their friends. They see the benefit to wider society, and they have been moved by the different stories told throughout the campaign. “End Our Pain” refers not just to physical pain or the symptoms that any one individual is experiencing, but the frustration, the delays and the uncertainty. It means the pain of knowing that others are suffering unnecessarily and the pain of knowing that the solution is out there—if they could only get their hands on it.
As I have said, medical cannabis is an idea whose time has come. Public support is there. The evidence from other countries is there. The individual evidence based on when people have been able to access medical cannabis in the United Kingdom is there as well. The Scottish Government stand ready to play their part. I hope that the United Kingdom Government will also take this opportunity to act.
It is a pleasure to follow Patrick Grady, who made a very good speech. It is always a pleasure to see someone fighting hard for their constituents, as we all are. He is right that all Members are mentioning similar cases, and I will also be doing so, but I first want to pay tribute to my right hon. Friend Sir Mike Penning and Tonia Antoniazzi for the great passion and tenacity with which they have campaigned on the behalf of those who are suffering such pain. Sufferers are looking for a way to reduce their pain, and they believe that they have found one. That is the key challenge for us.
My case concerns a four-year-old girl called Indie-Rose. Her parents Anthony Clarry and Tannine Montgomery live in Clare in my constituency. Indie-Rose has Dravet syndrome and, as we have heard in other cases, suffers from frequent terrible seizures as a result of her epilepsy. Her parents have found that cannabis-based medicine reduces those seizures dramatically—they estimate by around 75%—but it comes at a huge cost, because my constituents have had to crowdsource thousands of pounds to go over to Holland, pay for the medicine and bring it back. I strongly feel that we must examine this issue because, as others have said, that situation cannot be sustainable, especially in a country that has a free healthcare system that is designed to help not just those in need but the most vulnerable in particular.
The compound that Indie-Rose’s parents have been purchasing is artisanal and unlicensed. It is a mixture of Bedrolite and Bedica, which of course contain THC, and the single greatest issue for me is that while there is evidence about the impact of CBD, there is little evidence about THC. When I first became involved in the case, I felt that I had a duty to understand it more and to appreciate why there was resistance in what we might loosely call the medical establishment to prescribing a THC-based solution, such as that which was already being given to Indie-Rose and which was successfully, in her parents’ opinion, reducing her pain and suffering. I organised a meeting to discuss the situation in April at Addenbrooke’s hospital with some of the most senior clinicians that one could hope to have in a room, all of whom were familiar with Indie-Rose’s case. We are lucky to have hon. Members in this House with serious medical experience, but most of us are not clinicians, and none of us is the clinician in the cases that we are talking about. We are politicians, so I wanted to understand better the barriers to the NHS prescription that my constituents were seeking.
At times in this debate, the situation has been spoken of as if the argument is about whether cannabis-based medicine should be prescribed at all, but it is clearly about the type of medicines that should be prescribed. There is clearly nervousness in the medical establishment about THC. We should not hide from that point, and there is perhaps a very good reason for that point of view.
Does my hon. Friend agree that the points he is making are further evidence for why the conclusions of the interim report of the NHS’s review of the situation, as requested by the Secretary of State, should be published as soon as possible? The report will help us to identify answers to my hon. Friend’s points, and it may help my constituents Evelina Lukoševičius, who is two years old, and Maya Fairlie, who is seven years old, to access this life-saving medicine—if, indeed, that is what the review concludes.
My hon. Friend makes a good point. I would just be cautious about using the term “life-saving”, because this is about easing pain. These medicines are not cures; they relieve the pain of seizures. However, I understand my hon. Friend’s point, as we all did.
The meeting that I organised was instructive for me in many ways. Since then, I have obviously continued to correspond with my constituents to try to explain to them the powers that I have in this case and the next steps that they need to take. When this debate came up, they emailed to ask me to put one question to the Minister. Remember, they are not being prescribed THC-based compounds; they have been offered Epidiolex, which is a CBD-based medicine. They want me to ask whether any other children with epilepsy, or any other condition—of course, it is primarily complex epilepsy—have been prescribed THC-based medicines.
That information is in the public domain in the form of a written answer. As I understand it, 110 items—items, not people—of CBD-based medicine have been prescribed, along with 16 items of THC-based compounds, six of them on the NHS. That is an important point, as my constituents want to know whether others have been granted such medicines, and clearly they have. Where is the consistency? That is the confusion. Of course we cannot know the unique personal medical facts of each case, which must always be down to the clinicians, but we now know that THC-based solutions have been prescribed.
It is fantastic that we have the time to talk these things through. We do not have one NHS because, as my hon. Friend says, some people have been prescribed this. My constituent has been completely refused CBD, and the letter came back saying, “No, Mr Penning, we don’t give homeopathic therapies.”
The fear for those who use CBD is whether the European Commission will consider banning not the prescription but the public purchase of CBD. Apparently the Commission sees it as a novelty food, which we need to discuss because a lot of our constituents use non-THC products, which are perfectly legal, to ease their pain. My constituent has just texted me to say thank you because the medical company has given her some more oil, which the CCG has refused and thus her GP cannot write a prescription.
I am sure my right hon. Friend’s constituent is very pleased by that intervention. He underlines the key challenge, which is that these medicines are what is known as “artisanal”. They are unlicensed, and they are not standardised pharmaceutical medicines, which can be a problem for doctors who want to know their standard chemical make-up. Doctors feel they cannot entirely rely on these medicines. The nub of it is to what extent we in this place should be pressing those who have to make clinical decisions.
My hon. Friend John Howell said that this has to be a clinical decision, and my hon. Friend Crispin Blunt made the brilliant point that, if not for us, we would not be in this position and what has been prescribed so far would not have been prescribed. Let us be honest about it: this has been the result of campaigning, which is why I congratulate all those who have campaigned.
Nevertheless, this ultimately has to be clinically based. We cannot have political prescribing. It may be that applying maximum pressure has resulted in some prescription decisions. I hope that is not the case but, in reality, it may have been. We must have a consistent, transparent system that we have faith in and that leads to clinical decisions delivering the best outcomes for our constituents.
That is exactly why NHS England is reviewing the blockages in the signing of prescriptions. The Minister can confirm this, but I understand that the interim report will come out by the end of this month, and I believe the full report will go to the Secretary of State by mid-June, which is very quick for the NHS.
There has to be a level playing field. It is not for us to tell the doctors but, if a suitably qualified doctor is prescribing it, what is the blockage for my hon. Friend’s constituent and for the rest of them?
That is what I have been trying to understand. If I were to hazard a guess, I think there has been institutional resistance to CBD in general, but particularly to THC. In a sense, we have helped to force an open-mindedness towards it. When people say there is no evidence, what they mean is that there is no evidence from standard clinical tests. The idea there is no evidence is not true, because the evidence is our constituents’ lives and what they are seeing every day. My constituents do not go to Holland, having crowdfunded all that money, to buy something that does not work. They are parents, and we must have faith in them—by the way, all the doctors put a lot of store in that—but nevertheless, the institutions whose guidance lays the foundations for medical decisions ultimately need clinical trial evidence for it to be sustainable, in addition to individual circumstances.
I welcome the Minister to her position, which she very much deserves. My appeal to her is that we put everything we possibly can into getting that empirical evidence and undertaking those trials so that we can say to our constituents that everything is being done to ensure that clinicians can make decisions with the greatest confidence and without the nervousness we have all encountered.
Finally, and this needs to be said, I was asked in my meeting, “You do realise we are being trolled?” We have had debates in this Chamber about the horrible abuse we receive—some of us, particularly female colleagues, have received obscene abuse—but members of the medical profession are now getting the same thing. I understand the frustration of a parent who has done everything they can to support their child and who feels that the system is not helping them. That is why we are having this debate, because we want them to be supported by the system, but there can be no justification for people in the medical profession being subjected to trolling and the sort of abuse I know they have received because they feel they have to make an objective decision. They have the best interests of the patient at heart, and I have faith in the medical profession. It is nervous because of the lack of evidence, so we need to move on with trials as quickly as possible. We need to be able to give our constituents confidence that the system is fair, transparent and consistent, and is not acting in an ad hoc fashion.
It is a pleasure to follow James Cartlidge, who made a powerful and reflective speech. I particularly endorse what he says about the importance of having such evidence, a lot of which comes from the families themselves.
I join in congratulating Sir Mike Penning and my hon. Friend Tonia Antoniazzi, the co-chairs of the all-party parliamentary group on medical cannabis under prescription, both on securing this important debate and on the leadership role they have played on a cross-party basis in putting this important question on the House’s agenda.
As many Members have said, hopes were raised last year when the Home Office did what it did, and I strongly support what my hon. Friend Jeff Smith said about the importance of achieving a bespoke solution for our country. In particular, I support what he said about learning from international evidence. That combination of listening to the families and the campaigners and learning from the evidence of other countries could assist us in achieving the urgency that we all want to see.
Every other country that has done this has done it in a bespoke way. The fear is that if we introduce a bespoke system for a product or drug, everybody else will jump on the bandwagon, but most countries in Europe have addressed this. It has to be bespoke, not least because cannabis was illegal as a schedule 1 drug in this country for so long, but the evidence is here in the mums and dads and the children.
I endorse everything the right hon. Gentleman says, and his point about the evidence being here brings me to the main subject of my speech, which is to speak on behalf of my constituent Nathaniel Leahy and, in particular, his parents Lauren and James. His mum, Lauren, is here in the Gallery today. When Nathaniel was three months old he had his first seizure, and he was diagnosed with a rare genetic disorder that resulted in his experiencing up to 100 epileptic seizures every day. His mum and dad were told by the doctors that his condition was so rare that, as far as they could see, it was the only case anywhere in the world. Eventually, he was prescribed Epidiolex, via the NHS.
Lauren has told me that initially Epidiolex did bring some positive effects but they were not sustained and they “plateaued”, in her word, so she looked for something that would do more to ease the incredible pain that her son was facing. She was unable to secure a prescription via the NHS, so she went to the Portland Hospital here in London, where the specialist, who was previously at Great Ormond Street Hospital, gave a private prescription for Bedrolite. That is the prescription Nathaniel is now benefiting from; it is making a difference to the quality of his life. The cost to the family of that private prescription is £2,200 a month; they are fundraising and crowdsourcing funds in order to get that treatment for their son, but that surely cannot be right. We have heard from a number of speakers on both sides of the House about the principles of our national health service of meeting need and of people not having to contribute financially in that way. That figure of £2,200 a month is extraordinary, which is why I was keen to make a brief contribution in today’s debate.
We need to move forward based on the best available evidence, but part of that evidence is surely the voices of the families, and we need to make sure they are heard in this debate. Nathaniel recently celebrated his first birthday. I hope his mum does not mind my saying this, but she said to me earlier that it was a first birthday they were never sure he was going to see. They are very proud that he got to celebrate his first birthday. I hope that when the Minister closes the debate, she will be able to offer us not only some hope, but, perhaps more importantly, a sense of urgency that I can take back to my constituents and, in particular, to Nathaniel and his family.
Thank you for giving me the opportunity to address the House on this very important debate, Madam Deputy Speaker.
I want to restrict my remarks to the subject matter of medical cannabis under prescription, particularly in respect of epilepsy. Comments have been made about the wider application of cannabis, and recreational and casual use, but that is not what we are talking about here today. We are dealing with the most serious medical issue, and I want to congratulate Sir Mike Penning and my hon. Friend Tonia Antoniazzi on securing this debate on a matter of critical importance.
I too pay tribute to our good friend Paul Flynn for the work he did. I had the great honour of accompanying him when the Leader of the Opposition extended the octogenarian’s career development plan by appointing him as our shadow Leader of the House; many a chuckle we had on a Thursday morning, and we were the better for it.
I also pay tribute to Professor Mike Barnes. It is funny how our paths have been intertwined. When I was a lawyer representing the victims of serious injuries—particularly brain injuries—and their families, Professor Mike Barnes was a terrific fount of knowledge and expertise. It comes as no surprise to me that he has decided to devote his entire career to this critical issue, and no finer advocate or expert could we have in this cause.
I pay tribute to the parents of children suffering from epilepsy. I know Hannah is here, and I pay tribute to her and to Charlotte for the work they have done over the years.
May I also pay tribute to my wife, Sally? I have to put that right, because I never said it in my maiden speech—she will be pleased to realise that I am putting that right. As the parents of two boys with intractable epilepsy, we had the most incredible journey, and I am so grateful to her for everything she did for our children over the years. It was enormously difficult, as the seizures came with such regularity and force, and we had to become experts in the area. I will say some more about parents a little later, but when you have to understand the condition and the science of the drugs behind it, that is a huge demand on parents. We had suddenly to become not only expert in the condition, but expert dieticians, as we tried to embrace the ketogenic diet. Parents who have ever tried to deploy that as a way of dealing with the issue know just how difficult it is. It is a high-fat diet, where you are trying to starve your children, in the first instance, in order to put them in a state of ketosis, and that is incredibly difficult when you have your little one screaming at you that they are starving hungry.
Curiously, that technique was used in the middle ages. If someone was having a seizure, they were deemed to be possessed of the devil and they were thrown into a cell, where they were starved. The ketones would work and people would come back to the individual to find, “The devil has gone. The seizure is over.”
Some of the pain that people are suffering to this day is equally barbaric. We are hearing stories about parents who have not had access to treatments. James Cartlidge made a point about this not being an issue; I do not want to misquote him, but I want to take on this point. This can be not only an issue of pain relief, but the difference between life and death. We know that from our own case, because we lost our son on
Some terrific contributions have been made today. I pay tribute to all the speakers, because they spoke with such intelligence and expertise. There is a real common purpose to get this right—I know that that is the case—which is this House of Commons at its absolute best. I congratulate each and every one of the speakers who has contributed.
We have had an intelligent conversation about CBD and THC. Other jurisdictions have satisfied themselves that this is efficacious and a legitimate way of treating this intractable condition. We do not even need to look to those other jurisdictions; we need only to look at the parents who are having to go to such extraordinary lengths to deliver the treatment that they know works for their child. If it is acceptable across Europe, particularly in the Netherlands, and in Canada and New York, the evidence base is there. The evidence base is in other jurisdictions and it is in the benefits derived by the children that we know about all too well.
I take the point so eloquently made by the hon. Member for South Suffolk: our wonderful clinicians have only one thought in mind—to bring about an improvement in a child’s condition and to alleviate the symptoms. He makes a very valid point. Not only does any clinician who has been put under the sort of pressure that the hon. Gentleman described have our sympathy, but the people who put them under such pressure really need to look at themselves in the mirror, because that is not how we go about addressing such a difficult issue.
I say to clinicians that if we need to address issues of training and expertise, let us get on with it. I suspect, and have heard from others, that some clinicians may feel somewhat inhibited and unable to respond in the way they wish. If it is a matter of sufficient knowledge and training, that should be addressed. It may be that clinicians are suffering under a misapprehension and are reluctant to act because of the spectre of clinical negligence claims. I say to them, as I say to all medics: please put that consideration to the back of your mind. Any practitioner who relies on evidence will not be criticised. If no reasonable practitioner would have prescribed that way forward, there is an issue, but if it is within the bounds of competence and of reasonable skill and there is a body of knowledge that would allow a practitioner to prescribe, they can dismiss those thoughts from their mind.
Like my hon. Friend Stephen Twigg, I very much welcomed the change in the Government’s tone and approach not many months ago, for which they were rightly applauded. The tragedy is that that change has not been acted on since. Thousands of families across these islands are crying out to be given the facility that that change afforded. It has not happened and we are in grave difficulties.
I shall finish where I started. We must look to those parents who understand the condition and what works, and we must listen to them, because they are experts. I encourage clinicians to listen to their detailed evidence and the expertise they have built up. We simply cannot tolerate hard-working mums and dads having to go into hock to pay for these medications. The all-party group hears about the utter scandal of couples who are paying £1,500, £2,000 or £2,500 per month. I have no idea how they are carrying that burden. They have enough on their shoulders. There is a solution that we know works. Parents should be given the opportunity to bring some stability to their child’s condition and, while they are at it, some solace and peace to their own lives. They have their expertise; we should listen to them and do the right thing by them. The evidence is there and we should embrace it and get this logjam unblocked at the earliest possible opportunity.
The families of severely ill children and patients who had lived for years with conditions such as MS that meant a life of extreme pain believed that they had been offered a lifeline when the Home Secretary rescheduled medical cannabis so that it could be prescribed to patients who needed it. Six months on, hope has turned to despair as we are now in the unconscionable position whereby medicinal cannabis has been legalised but is almost impossible to access. It turns out that the policy change last year has so many ifs and buts and is steeped in so much bureaucracy that it is not yet worth the paper it was written on. The public are understandably bewildered and confused.
We have all heard the stories of parents who want only to protect their children from severe pain being denied life-saving drugs or having them confiscated by immigration officials. While the NHS and the medical professions are having arguments over what constitutes evidence on who is eligible for the drug, children and patients are suffering needlessly every day. It is a shameful situation and, as is so often the case, the Government’s defence is to say, “It’s nothing to do with us.” They have distanced themselves from the implementation of their own policy and outsourced the tricky bits to those on the frontline who have been given little support or guidance. In doing so, the Government have let so many people down. They have left seriously ill patients to fend for themselves—to be pushed from pillar to post, unable to find an NHS clinician willing to prescribe the only meds that control their seizures.
The campaign group End Our Pain, which is supporting more than 20 desperate families of children with intractable epilepsy, are having to help to fundraise around £2,000 a month to finance trips abroad to get access to the medical cannabis that the children need. This issue has nothing to do with illegal drugs and neither is it a Home Office issue; it is a public health issue. More than that, it is a humanitarian issue. The evidence is clear—certainly to the parents whose children are alive because of CBD—that the benefits outweigh any negative effects, so why are patients still cruelly suffering? Parents and patients are being criminalised, forced to go abroad or to order off the dark web to get hold of the life-saving medicines they were promised they would be able to access legally. I realise the importance of a proper regulatory development process to coincide with the new policy, but why is it taking so long?
The hon. Gentleman is making a powerful point about the ineffectiveness of the new regulatory regime and how it is not working for families. I have a constituent called Jorja Emerson, and many campaigning Members from all parties will have met her father, who is in the Public Gallery. He was one of the first to receive a prescription under the new regulations. It has to come from a private clinic and it costs him exorbitant amounts of money, and even then he has to pay to fly to London to get it because he cannot cash the script in Northern Ireland. Even when it is operating, the system is not working for Mr Emerson or his daughter.
I absolutely agree with the hon. Gentleman, who makes a powerful point. That is why we are debating this issue today and urging the Government to take urgent steps and make these drugs available for children who are suffering. We can save lives by legalising them.
The evidence base and research surrounding the new policy must be called in and disseminated as soon as possible, and the barriers to clinically sound prescribing, including any training and support for prescribing doctors, must be addressed urgently. Yes, we have to get the policy implementation right and safe, but it is cruel and unjust to keep patients suffering while the Government hide behind a wall of red tape.
We have heard some really rather touching and heartfelt speeches, and I suspect that I cannot justice to some of what we have heard. Although of course I condemn the current policy of criminalisation, I am incredibly sceptical about the use of cannabis in a recreational sense, but I am very much in favour of us moving towards a proper, normalised relationship with cannabis and cannabinoids in our health system.
The cruelty of what happened last year was that we dangled hope in front of lots of people’s faces—not only the children and their families who led the campaign, but many adults who suffer with long-term pain conditions and other conditions that would be helped by medical cannabis—and said that medical cannabis would be available for them. Through administrative burden—deliberately or because of a cock-up, I cannot quite tell—we have created a system in which the barriers are so high that the drugs are not being prescribed. Part of the problem is to do with the rescheduling, which has not been sufficient. The rescheduling has not normalised cannabis and cannabinoids even to the level of opiates. Extra conditions have been laid down through which clinicians have to jump; they have to know that no other drug could work.
I thank the hon. Gentleman for giving way. I am very conscious of my constituents Darren and Dannielle Gibson and their young daughter Sophia. I see that the Minister, Mr Hurd, is in his place. We are greatly indebted to him for his co-operation and help. [Interruption.] The Minister is in the House, but not in his place. Let me get it right. There were very memorable moments in the fight for Sophia’s medication, including coming to terms with the differences in policy between Northern Ireland and the mainland, jumping through the hoops in Northern Ireland, liaising with the Minister to find a way for my constituent to get what she needed in time and my constituent being rushed into intensive care. But here is the story. That young girl today is in receipt of medicinal cannabis. Her epileptic fits have been reduced to one a month. She can attend school again and do all the recreational things with her young friends at school and in the playground that she never could do before. It happens. It can be done. It changes lives.
It can be done if it is given to patients at the right time and in the right manner. Part of the reason why clinicians are possibly nervous about prescribing these drugs is that additional thresholds have been added to doing so. There is an extra nervousness, particularly with new drugs, as we require their use to be based on already pre-existing proven evidence.
Earlier, I mentioned what had happened with other life-threatening diseases, such as HIV, and what had happened at other times. We have now changed, relaxed and modified the rules around testing, but that was not done immediately. Those who remember will know that there was a vociferous campaign from people, particularly in America but also here in Britain, aboutnd the folly of this requirement for pre-existing medical knowledge. The shift was to look at harm: what is the harm done to not trial and not implement anything versus what is the harm done of any potential risks. In this case, we need to employ that kind of sense. Back then, it was not the clinicians or the Government who shifted the issue; the shift was achieved through the fantastic work of campaigners.
We are again seeing that fantastic work of campaigners. They may need the drug themselves, or one of their family may need the drug, and so they are having to push this debate. It is frustrating to some extent that we have not learned the lessons of previous eras when this issue was argued out. In fact, time and again, the issue has been won on the side of prescribing. Why this time are we coming down on the wrong side of the argument? What is it about cannabis that suddenly sets off some kind of alarm bell in the heads of Ministers or civil servants so that we create a system that is not particularly conducive to prescribing?
I am bemused by the current situation in which, for some reason, private prescriptions are acceptable—others have talked about this—and seem to be getting through if people can raise the right amount of money, but our NHS is not able to reflect that. I do not know whether that is a consequence of cuts or of an NHS that is at breaking point. It could be a consequence of commissioners not wanting to prescribe these drugs, which seems strange to me because, when I look at the figures, the cost does not seem too high. It is cheaper than prescribing some other traditional medicines. It seems to me therefore that this is not an austerity issue, which we know is a bigger problem in the NHS, but some other hidden force, which means that parents need to raise thousands and thousands of pounds to try to get private prescriptions and self-prescribe.
I would like to slightly widen the debate from children, on whom we have quite rightly focused, to some of my constituents who are adults in chronic pain. Although it is right that, through the story of a child, we can push this issue forward, the fact is that this drug could help millions who, as we have heard earlier, may already be self-prescribing with cannabis. Self-prescribing is not good for a person’s long-term health or for the state of healthcare. Doctors who are trying to provide them with holistic and rounded care cannot fully do so if people are having to go off and self-prescribe elsewhere.
United Patients Alliance is very active across the UK, but particularly in my constituency. One of my constituents, a 42-year-old man, was diagnosed with complex regional pain syndrome in October 2006. If he took conventional medication, he would be expected to take 10 ml of oral morphine a day, which is a huge amount. It means that his actual life quality is completely reduced. He is as not as cognisant as he should be or as able to interact and hold down a job. With the head of the pain clinic at St Thomas’s hospital, he has discussed moving on to medical cannabis. They have even said that it would be a real possibility, but they believe that the hurdles are too high for them to be able to prescribe it now. He has now resorted to getting medical cannabis from other sources—to some extent involving his doctor or his clinician and creating a network of people having almost to lie and deceive the state. It is a bizarre situation. We end up making people do things in hushed conversations, rather than being able to record things properly in medical records.
This absurdity must end. We thought that it had ended. My view is that the schedulisation of drugs should not fall under the remit of the Home Office; it should be in the Department of Health and Social Care. It makes no sense for scheduling to be anywhere near the Home Office, because it should be based on medical evidence—the Home Office should, of course, decide on classification. The Department of Health and Social Care needs to make some real moves very quickly to demonstrate that this has not all been hot words and big let downs.
Several speakers have been quick to explain that this debate is about medical cannabis and not cannabis for recreational use, and, within the context of this debate, that is quite correct. The fact that we feel the need to explain that is a strong indication that there is, in the wider audience, a great deal of mistrust born through ignorance of what cannabis actually is. We even start getting confused when we try to differentiate between cannabis and hemp. What we have here is a mess of our own making.
This is about a plant that can be grown in the UK and, indeed, is already grown in the UK but under licence from the Home Office—more about that later. It is a plant that is good for the soil in which it grows; a plant of which almost every single part can be utilised to make bio-degradable plastics, bio-degradable cloth and, as we know, medicines; and a plant that has been cultivated for thousands of years in various forms. Why do we have an issue with it? Why has cannabis been demonised? When we mention the word cannabis, why for the majority of people does it conjure up the image of somebody sparking up a joint, a spliff, a jay, a doobie, or a roach? It is because, in the Misuse of Drugs Act 1971, this place got it horribly wrong. It fell in with the prohibitionist mantra from the USA and it made a range of drugs illegal.
Before then, we controlled their use; we tolerated that use socially; and we prescribed them as required. It was actually called the “British system”, and it worked. No criminal gangs controlled the production and distribution. There was no escalation in violence to protect the marketplace, no county lines and a lot less corruption. But with that one incredibly clumsy Act, we demonised the entire plant.
If we were talking about medical hemp today, a range of folk would be more open to the discussion, but because of one cannabinoid in the plant—tetrahydrocannabinol or THC—we have ignored the other 100-plus cannabinoids. We remain ignorant of the benefits they can bring and of how they interact with the endocannabinoid system that each and every one of us has in our own bodies.
The lack of medical research in the UK has led to an entirely unsuitable situation, and my frustration is that we seem to be in no hurry to clear it up. Why are we not moving heaven and earth to license products that are used widely in other countries? Across the UK today, people are suffering needlessly. The medicines exist and are being prescribed and used elsewhere, but the UK Government’s attitude is, “Nobody knows better than us.” We now find ourselves in a position where we are being forced to fight this issue one case at a time.
We brought Alfie Dingley to No. 10 to meet the Prime Minister. That seemed to make a difference. Billy Caldwell’s mum brought the matter to a head by attempting to bring the product into the country. That moved things on, too. And in their situation, would any of us not do the same? Would we not do whatever it took to gain access to medicine for our children? We cannot keep on fighting this on a case-by-case basis. It is cruel and heartless, and there are simply too many kids out there who could benefit now. I apologise to the many people who suffer with arthritis, multiple sclerosis and cancer, because we do not shout about them as much, and they also need to be listened to. The sad fact is that this Government have shown that it takes heart-breaking cases of kids with epilepsy to bring them to the table.
Would my hon. Friend confirm my understanding that, for the 10,000 people with MS who could benefit from cannabis for medical use, nothing has changed since
My hon. Friend is absolutely correct. I have a briefing from the MS Society that illustrates his point. It says that, since Thursday
“Nobody with MS has so far benefitted from the change in the law, and access to cannabis-based medicinal products remains very limited. This includes access to Sativex”.
Sativex is a licensed product. Of course, people can get it privately if they can spare £500 a month.
As I have said, the system is cruel and heartless. Let us look at one example of how stupid our current laws are and how damaging they are to the patients we are supposed to be helping. If a child suffers from certain forms of epilepsy, there is good evidence that a cannabis-based medicine called Bedrolite may be of great help. Any parent or guardian in that situation would want to access Bedrolite. I know of one child who was having 16 seizures a day and is now on Bedrolite. As of today, that child has been free of seizures for 50 days. Can we begin to imagine how great that is for the child and for his surrounding family and friends? But his supply is running out and his mother said to me yesterday, “I can’t let my boy get sick again.” What has she got to do to keep her boy well?
The good news is that people in the UK can get Bedrolite—if they are rich, if they fundraise, or if they go to a private clinic, pay for a prescription and then pay £560 per bottle. For one patient I know, that equates to £28,000 a year. And that is not the most expensive case I know of—not by a long way. I know of cases where it would cost people twice that much to medicate their children. If people are prepared to break the law to provide medicine for their child, they can travel to the Netherlands and purchase Bedrolite for £167 a bottle, reducing the annual cost to £8,100 a year, plus travel and accommodation costs, but those people risk being arrested and separated from the child they are trying to help.
I know of a wee boy in Scotland whose mum has brought back oils illegally from the Netherlands. He recently went through a bad spell of cluster seizures. Normally, he would be in hospital, unconscious, and unable to walk, eat, speak or swallow. This time, he has remained at home and has not needed any rescue medication. His mother should not have to pay thousands of pounds a month and break the law trying to help her sick child. It is no wonder that the scammers have moved into this marketplace. As a parent wrote to me yesterday to explain,
“The vultures are praying on very vulnerable desperate families and selling fake or non filtered oils which is unsupported and also very dangerous”.
This highlights another problem. When we sit back and do nothing, scammers and criminals will move in. People will say, “I’m buying a product that is cannabis, but it’s not doing me any good.” Then the Government will take another step back and say, “Well, the evidence simply is not there.”
People’s last option is to do what the Government have said they should do. To access medical cannabis, someone must have tried medical cannabis and experienced benefits, but, as I have pointed out, that involves either a lot of money or breaking the law. That is what the Government are asking parents to do. A person must have exhausted all other drugs, despite knowing they do not work and have many dangerous side effects; we are asking people to endure side effects and disappointment to justify their request. Once they have done that, they find that their GP cannot prescribe under the current system and that specialists are reluctant to do so because they are going out on a limb and fear reprisals from the medical community.
We have a situation where the UK Government say, “We have a system,” and absolve themselves of their responsibility and duty of care to the citizens of the United Kingdom. I was going to ask the Minister explain why we cannot treat any cannabis-based medical products as schedule 2 drugs under the statutory instrument where that product has been prescribed by a medical practitioner in another jurisdiction, but of course we have a Health Minister in front of us today, not a Home Office Minister. Yet again, this problem falls between two stools. The Home Office or the Department of Health and Social Care—who will take responsibility for this issue and move it forward?
While we delay, the privatised UK cannabis business grows and the privatised pharmaceutical companies are controlling the available products with an iron fist. It looks as though we are restricting the provision of medical cannabis while we evaluate a marketplace and develop products with the intention of making a lot of money out of it, but the Government would not be that cruel, would they? Not deliberately! The Government do not have a vested interest in the pharmaceutical industry, do they? They are not granting licences to their pals to grow cannabis or encouraging family members to invest in pharmaceutical companies with a vested interest, are they? Surely not. But of course, we know that they absolutely are. That is the backdrop to the photo opportunities and the sympathetic words of staged understanding from Ministers. Unless someone has a child living in these circumstances, they cannot possibly understand the need, the frustration and the anger. As politicians, we are elected to listen to the people. The parents and guardians of these young men and women are screaming at us, “Give us access to affordable, legal medication for our children, and do it now.”
This has been a very powerful and emotional debate that has moved Members on both sides of the House. It has also been characterised by anger and exasperation on both sides. I thank the Backbench Business Committee for selecting this subject for debate.
I pay tribute to my former, much-respected colleague, Paul Flynn, for his excellent campaigns on this subject. Somewhere, he will be cheering us on and I hope that he will have more to cheer about by the end of this debate, when we hear the Minister’s comments. I pay particular tribute to Sir Mike Penning and my hon. Friend Tonia Antoniazzi; their unflinching commitment to this cause does them credit. Thanks is also due in no small part to the all-party parliamentary group, whose dedicated purpose is to
“help secure…access to natural cannabis for medical purposes in the UK under prescription from a medical professional.”
The group has worked tirelessly to that end, highlighting the barriers that exist and posing constructive suggestions to remove them.
As Crispin Blunt rightly said, we are not concerned today with criminals and illegal drug supplies. We are not concerned with the use of recreational drugs. We are considering a most important health issue. I welcome the fact that at long last the Government accept that the therapeutic use of cannabis is a public health issue and not the business of the Home Office. I trust, therefore, that we will never again see parents in possession of medicinal cannabis products accosted and treated like criminals. I refer of course to the disgraceful treatment meted out to Teagan Appleby’s family.
Cannabis has long been known to contain active ingredients that could have therapeutic use in the treatment of many conditions, including muscular dystrophy, Parkinson’s disease, Crohn’s disease, cancer, AIDS, sickle cell disease and many more. International research and real-life experience in the UK have shown that the active ingredients CBD and THC, in combination, can provide relief for these conditions. There are also strong indications that these medicinal cannabis products can have a transformational effect in paediatric epilepsy cases. In the UK, though, we have been very slow to accept this and even slower to act to help those who could be helped.
Other powerful drugs with significant street values, such as heroin and diazepam, have long been available on the NHS under the supervision and control of qualified clinicians. Such drugs are extremely harmful in the wrong hands, but, subject to the existing controlled drugs regulations, these products can be used beneficially. In recent years, we have made some progress and have begun to accept that cannabis could and should be available in the same way. This changing attitude has most definitely been driven by increased public awareness of the suffering of individuals, many of them children.
Just to reiterate what the hon. Lady is saying, my young constituent Sophia has not been hospitalised with an active seizure in 10 months. I quote her mum:
“Our little lady just amazes us every day and we are very blessed to be in this position but we can’t help but think of the thousands of other children and adults that could need this right now!!!!!”
Does the hon. Lady agree that we must ensure that we are making progress? This debate is about progress and moving forward, so it is important for the Minister to do just that.
I am grateful to the hon. Gentleman for his intervention, and I absolutely agree. There is the potential to help thousands. We must move forward at the earliest opportunity.
Members have raised some powerful cases on behalf of their constituents—adults and children who could benefit. I want to mention the experiences of the Griffiths family. Mrs Griffiths asked me to help her nine-year-old son, Ben. Ben suffers with severe intractable epilepsy. This means that he has up to 300 seizures a day and has come close to death on more than one occasion. At the new year, Ben was admitted to Alder Hey Children’s Hospital, where, during an 18-hour period, he was observed to have 200 seizures. Ben’s parents asked whether he could have access to CBD and THC, but they were informed that Alder Hey has a blanket ban on medicinal cannabis products containing THC. Ben was discharged and his discharge letter stated that his parents had asked for an illegal drug.
In desperation, the family have turned to a private neurologist and, thanks to him, since January this year, Ben has been taking medicinal cannabis CBD and THC. His condition is much improved and yesterday he had only four seizures. His family tell me that Great Ormond Hospital and Professor Finbar O’Callaghan, the head of the British Paediatric Neurology Association, have acknowledged Ben’s improved condition, but the family are still unable to get an NHS prescription to supply the medicinal cannabis that he needs. The private prescriptions for his treatment are costing the family £2,500 a month. The family cannot continue to fund what is for Ben life-saving medication and they fear they will lose their son. Mrs Griffiths asked me: “How sick does our child have to get before the NHS will help him?” I know that question will go to the heart of everyone in the Chamber today. In relation to the high costs of private prescriptions for this medication, we are seeing the development of an unjust two-tier system where those who can pay get access to vital medication and those who cannot pay go without. That goes totally against the very principles of the NHS of which we are so proud.
In July 2018, the chief medical officer published a report declaring that there was conclusive evidence of the therapeutic benefit of cannabis medicinal products and she recommended that the whole class of cannabis medicinal products be rescheduled under the misuse of drugs regulations. The Home Secretary listened and, on
Ironically, changing the legal status of medicinal cannabis has actually made the situation worse. Prior to that change in legislation, the Home Secretary had the power to grant special licences to make medicinal cannabis available. The Home Secretary no longer has that power. Now supplies are conditional on both clinical sign-off and a funding agreement, and that is not happening. I know that the Minister and the Secretary of State want to resolve the problem. I also know that the Secretary of State has met some of the affected families and has promised to help them. But the clock is ticking. The End Our Pain campaigners are absolutely clear that this is a matter of life and death. It is now two months since the Secretary of State met the families and, in that time, not one single NHS prescription has been written for medicinal cannabis that contains both CBD and, crucially, THC. There are many good intentions, but the Department’s implementation procedures following the rescheduling of medicinal cannabis are not fit for purpose.
The Secretary of State has said repeatedly that he cannot overrule the judgment of clinicians, and of course we do not expect him to do so. We do, though, expect that he recognises that these are exceptional circumstances of great urgency and urgent special action is required. It is clear that the procedures are not working and we cannot rely on a “business as usual” approach. As my hon. Friend Jeff Smith said, we need a bespoke solution. We need an acknowledgement that cannabis is a special case. We need a broader analysis of the evidence for the efficacy of medicinal cannabis that brings together worldwide research with the experience of patients and families in the UK who have benefited from using medicinal cannabis. While NHS England investigates the causes of the blockages in the implementation process, the NHS needs to step in to meet the costs of private prescriptions.
We need improved education and support for medical practitioners with regard to medicinal cannabis. The current guidance for prescribing medicinal cannabis needs to be changed to support and protect prescribing clinicians who prescribe, following best practice, in the best interests of their patients. We need the Department of Health and Social Care and the NHS to stress that medicinal cannabis is legal and that there is an expectation that it will be prescribed in the same way as any other unlicensed medicine when appropriate. We need a guarantee on funding. We need to know that everyone right across these islands, wherever they live and whichever CCG governs the healthcare in their community, has access to funded products where appropriate. Good intentions on their own are not good enough: we need urgent action.
This has been a very moving and important debate. As I know from my own constituency, and as has been outlined with such passion by Members on both sides of the House, this matter leads to great distress for patients and their families. I recognise the deep frustration of families and patients, which has come across strongly this evening. All of us who are parents or who have cared for a loved one can empathise with them. I pay tribute to Andy McDonald and his wife Sally, who shared their experience with us. It is them and parents like them whom we are concentrating on this evening.
It would be remiss of me not to mention my right hon. Friend Sir Mike Penning and Tonia Antoniazzi, all their work on the all-party group and their tenacity in keeping this issue on the agenda. Many points have been raised. Great frustration has been expressed and I have heard that. I will be speaking to the Secretary of State again and taking back all the messages to the officials, but I will try in my remarks to answer the points made.
In November last year, the law was changed to ensure that doctors on the specialist register of the General Medical Council can legally prescribe cannabis-based products for medicinal use in the UK. It is right that we put these decisions in the hands of clinicians because they are the ones with the best knowledge of all the treatments available for conditions in which they specialise. The Secretary of State and I have been clear that whether to prescribe must remain a clinical decision, to be made with patients and their families, taking into account the best available international clinical evidence—I want to reassure the House that we are in close contact with colleagues in other countries to ensure that we learn from their experiences—and the circumstances of each patient.
It is not for me as a politician to second-guess or pillory clinicians’ decisions. I was alarmed to hear my hon. Friend James Cartlidge say that doctors are being trolled for the decisions they are or are not making. They have the best interests of their patients at heart and their primary focus is to do no harm. But I recognise that we do not have the optimal system in place yet. It is undesirable that patients are travelling abroad. The Secretary of State and I are determined to do everything we can to ensure that patients can obtain medicines in this country if it is medically appropriate. There are already systems in place to do that and I want to do everything I can to understand why patients are not using those systems to access medicines here in the UK.
We want to continue to refine the system so that the demands of patients who want to try medicinal cannabis are balanced against other demands on NHS funding. Given the embryonic state of the evidence base on the effectiveness and cost-effectiveness of medicinal cannabis, that is not easy. However, we are working hard to ensure we get this right, because it is crucial. I have had many discussions about this with my hon. Friend Crispin Blunt, who spoke with great passion. He mentioned the need for more evidence and the issue of growing a market. We will explore that with the Department for International Trade.
I want to pick up on a point that my hon. Friend John Howell made about the number of prescriptions issued since November last year. Data show that, until the end of February, there had been six items issued in the community under NHS prescription. He thought there were none at all.
My information is that there are six and I will happily write to my right hon. Friend with more information.
As the House heard last month, the Secretary of State for Health and Social Care has met many of the families and patients who Members know through their work on the APPG or their constituencies. All of us could not help but be moved by these distressing cases and the continued efforts of those who support loved ones. The Secretary of State asked NHS England to conduct a process review to identify any inappropriate barriers to clinically appropriate prescribing. I am pleased to say that the review is under way, and NHS England is working with my right hon. Friend the Member for Hemel Hempstead, the all-party parliamentary group on medical cannabis under prescription and patient representative bodies to identify cases that might best illustrate the experience of a range of patients.
We have lots of time, but the Minister is being generous in giving way. Can she confirm when the interim report will be issued on the blockages and when the final report will be made to the Secretary of State? It was indicated to us at a meeting with NHS England only last week that there would be an interim report by the end of May and a report to the Secretary of State in June. Would the Minister like to confirm that?
I will come on to timelines later in my remarks. NHS England is currently obtaining patient consent and scheduling the necessary interviews with clinicians, decision makers and their patients. The first interviews were held today.
I want to touch briefly on devolved matters. Health is a devolved matter, but officials across the UK have been working closely on the development of this policy. The law is exactly the same in all four countries of the UK and only funding is devolved. Members have said that clinicians might be nervous about prescription and that we need to improve training. I will talk about this later, but the training package that has been commissioned from Health Education England will be made available across the UK.
The Minister has heard my comments on behalf of my young constituent, Sophia Gibson, who is getting medicinal cannabis through the trust area. May I suggest that, if that is how it is done for my constituent in Northern Ireland, it could be done for people across the rest of the United Kingdom through their trust area or non-governmental organisations—wherever the responsibility lies?
I thank the hon. Gentleman for his comments. Prescription is in the hands of the clinician. Whether the prescription is paid for is ruled on locally and I will talk about that later.
I would like to tell my right hon. Friend the Member for Hemel Hempstead that a report, including any recommendations, is expected shortly. We will carefully consider any further action we might take to improve access in the light of that report and the clinical guidelines that are due to be issued by NICE. Members are rightly frustrated with the slow pace, because of the distressing cases and because of examples they have seen from abroad. NICE guidelines have been expedited. They would normally take two years to produce, but these guidelines will come out in half that time, this autumn.
Members have said that patient expectations are not being met and that clinicians are taking an overly cautious approach. With new medicines, we need a strong evidence base. That base is still in development, partly because of the historical overhang.
The Minister was probably going to pick up the point I made about the assessment of the risk-reward ratio. Humanity has goodness knows how many thousands of years of use of this plant, and it may need a different risk-reward assessment base from the classic medical variety. Sitting in the background for all the people who regulate our medicines is thalidomide and their anxiety about what might happen. We might need a different framework for this.
My hon. Friend raises an interesting point, as he always does. The normal NHS medicines governance systems apply, and they are being used to support good clinical practice and safe and effective prescribing, but we could of course do more to educate and support the health profession.
I want to pick up another point raised by my hon. Friend the Member for Henley, about who does the prescribing of these medicines. These are not frontline medicines, and it is right that specialists who have detailed knowledge of all the treatments available for these particularly difficult cases are the ones who should be responsible for prescribing. Cannabis-based products would not normally be considered until a patient was at the stage in their treatment pathway when they were under the treatment of a specialist.
On education, Health Education England has been commissioned to develop an online training package. The aim of the package is to familiarise those working in the health sector with the change in the law provide and straightforward information about the products and what is known about their mechanisms of action. It will support and underpin the knowledge and understanding gained by specialists as experience in prescribing these products grows.
My hon. Friend is being generous in taking interventions. She has set out the risks, but may I pay tribute to her and the Secretary of State, who have not simply looked at all the risks and roadblocks that medics put up, but have said how important it is to produce answers, find solutions and take things forward? I urge them to continue with this excellent work to make sure that progress is made, and to continue to push forward.
I thank my hon. Friend. That is why, after the urgent question last month, the Secretary of State issued the process review. As I have said to my right hon. Friend the Member for Hemel Hempstead, that review will be reporting shortly.
We cannot be sure that cannabis-based products are safe or effective. There is a body of anecdotal evidence of therapeutic benefit, and the chief medical officer concluded that the evidence was sufficient to recommend that these products be considered for rescheduling from schedule 1 to schedule 2 under the Misuse of Drugs Regulations 2001, and that their medicinal benefits be further examined. All products in schedule 2 can be prescribed; cannabis-based products for medicinal use are no exception.
I want to talk quickly about the evidence base. Some people have talked about randomised controlled trials, which are what we normally use when there is anecdotal evidence. As hon. Members have said, parents are arbiters of this evidence. The normal procedure is that we do not base prescribing decisions on anecdotal evidence, which is why we have asked the NIHR to stimulate further research. We need to build up the existing evidence base, including through observational trials.
Does the Minister accept that these are not normal circumstances? These families and parents are absolutely desperate to access the medication that they have seen work for themselves. Can she find some way to circumvent the usual processes?
I recognise the deep pain that families are going through, and I do take the point about the great frustration and desperation of the families. What I would say is that we have asked for more evidence, and we are working with everybody necessary to try to get this done as quickly as possible. NICE is internationally recognised for its robust and evidence-based evaluations and guidelines.
I have two families in my constituency whose children are both suffering from epilepsy. They are taking Bedrolite today, and the families know it is beneficial for their kids. That is anecdotal evidence, but it is in their houses and they can see it working. The prescriptions for the sources they have will run out in June and in July. Can the Minister tell me what I should say to those parents when their kids’ prescriptions run out?
Of course I could as a parent, but again, I am not a doctor, and I am not here to make that call. What I would say is that I am very happy to meet the hon. Gentleman to get more of the facts he is presenting to me.
What is needed to support such prescription is evidence of efficacy, and for public funding evidence of cost-efficacy. That is the system we apply to all medicines and medical devices in the UK, and cannabis should not be treated any differently. The current evidence base has been summarised by the professional bodies in their interim clinical guidance, and it will be further examined and reported on by NICE shortly.
I have one question for the Minister: has the cost analysis been done on a particular case? When I spoke earlier, I spoke about Alfie Dingley. It would be very interesting to see the impact of his case financially–the benefit that has been gained to the NHS and the money that it has saved the NHS since he has been taking the drug.
I apologise to the hon. Lady, because she did ask me that, and I am afraid I forgot to send a note to the Box. I am happy to write to her about whether that analysis has been done.
Many hon. Members, including my hon. Friend the Member for South Suffolk, talked about funding. Funding decisions are local decisions with clear local procedures. The process review is looking at this, and as I have said, it will report shortly. I call on the industry to invest in more trials, and to publish the results and the full underpinning data, because we all want to see licensed products that doctors can use with confidence.
Where there is supporting evidence, the Government and the NHS will work with companies to make the products available. Indeed, more than 110 patients are now being treated with a pure CBD extract product—Epidiolex, which numerous hon. Members have referred to—on an early access programme, ahead of a licensing decision by the European Medicines Agency. In developing a licensed product, the evidence has been generated on the safety profile and effectiveness of the product. It is this that provides clinicians with the confidence to prescribe and the system with the evidence it needs to make decisions on routine funding. The NHS does not routinely fund any new medicine until it has been through a process of evaluation to ensure that it is safe, effective and represents value for money.
On another point that the hon. Member for Gower brought up, about one of her constituents going on the Epidiolex trial, the specialist centres around the country are referring patients to GW Pharmaceuticals. There are certain criteria and a certain number of places, but if she wrote to me, I would be happy to meet her and we could discuss that further.
We need to develop further our knowledge base on these products. That is why good-quality clinical trials are imperative. We need to know more about the scale of the benefit of cannabis-based products across a wide range of indications. We also need to understand how this compares with existing treatments and, indeed, other promising new drugs that may be as effective.
I cannot say what will be in the trials, because I am not a scientist running them. What I can say is that we have made the call and want everybody who can to take part in the trials so that we have a much fuller picture and can get to a situation where we have licensed products that doctors feel safe prescribing.
I will conclude by thanking all hon. Members who have taken part in this useful debate. This is an extremely difficult area, and hon. Members have spoken movingly about heart-rending cases. I hope that I have shown that the Government take this very seriously. We are committed to ensuring that policy is implemented in a safe and sustainable way, making cannabis-based products available to patients where clinically appropriate.
Not only was I enormously proud when I went before the Backbench Business Committee to ask for this debate last Tuesday, but I was a bit shocked to get the debate this afternoon—at least we have not had to go home early. We have had an absolutely brilliant debate.
To be honest with the Minister, I am not sure how far this has taken us. Fundamentally, I have an issue with the fact that there are families who, through crowdfunding, or however they fund it—I understand that some parents have had to remortgage—are getting this drug for their children perfectly legally, and qualified consultants and specialists are issuing prescriptions on the NHS, but they are not being honoured. That is something that the Department of Health and Social Care is wholly responsible for. I fully accept that there are other issues to do with the Home Office.
Many people have been marched up to the top of the hill. I accept that for many years, when Paul Flynn was campaigning on this and a Government of a different colour were in office, it did not happen because it was in the “too difficult” pile called schedule 1. We are not in that position now; we are in a position where this House—we have now debated this issue for four and a half hours—can tell the country and the Government that what is happening now, with people who can afford it getting this medicine and those who cannot afford it not getting it, has to stop. This Government have to stop that.
I know how difficult it is. I was the Home Office Minister responsible when this was discussed. I was the Minister who stood at the Dispatch Box. I know the blockages. I have sat with my APPG co-chair, Tonia Antoniazzi, and the NHS chief pharmacist. We know that we need to unblock this. We need to believe that the NHS, free at the point of delivery, will deliver for these young families, and that the cheque book is not going to win.
I will raise money and crowdfund, because I will do anything I possibly can to help, but we should not have to do that. The medical evidence is there from other countries. We are going to have to make exceptions, as has been said, because this situation is different. We cannot put one of these children on a placebo, because we know that it will make them really ill when they withdraw from what they have already been given.
The children who have been given this product, and some adults, as in my constituent’s case, need to have confidence going forward. They do not need to beg, borrow and steal to get their lives back on track—and they will not be put back on track fully, because this is not a cure, it just eliminates some symptoms for some people with some conditions. We really do not know the full position yet because, as the Minister has said, we have to do more work. However, in quite a lot of specific cases of paediatric epilepsy with seizures, it appears that cannabis oil makes a difference to the quality of people’s lives. We were sent here not to chat for the sake of it, but to make a difference to people’s lives, and I hope that is exactly what the Minister will do.
Finally, I will clearly not get another urgent question for a while, but Mr Speaker said to the Secretary of State for Health and Social Care that we will persist. He was referring to me, but I say that on behalf of the all-party group, which now has over 100 members. This is what this House is good at, and if we get it right we are very good at it. This has been an excellent debate.
Question put and agreed to.
That this House
reaffirms its welcome for the change in the law that allows access to medical cannabis under prescription, but notes that only a handful of prescriptions for whole-plant-extract medical cannabis have been issued on the NHS, which has left a significant number of patients, many of whom are children with intractable epilepsy, with no access to medical cannabis and experiencing severe distress;
and calls on the Government immediately to act to ensure that medical cannabis is available to appropriate patients and in particular to children suffering severe intractable epilepsy, such as Alfie Dingley whose plight and campaign did so much to secure the change in the law.