Motion made, and Question proposed, That this House do now adjourn.—(Alan Mak.)
I have had a number of indications from Members who now wish to speak in this debate. As we have finished the main business early, we are able to facilitate that, but I ask Members please to stand and indicate that they wish to speak. They will be called in at least the order that people have come up to me in the Chair.
It is in some ways a pleasure to speak in this debate, but in others it is a huge disappointment that we are still debating this issue years after we thought it was in fact settled. I go back in this issue to my first face-to-face meeting with my constituent, Karen Gray. It was in London, curiously—not Edinburgh—in the pouring rain. We were meeting to hand in a petition to Downing Street calling for the legalisation of medicinal cannabis. I had been in touch with Karen and her son, Murray, before that day and was aware that Murray had a rare form of epilepsy that was blighting his childhood, with multiple seizures, hospital admissions and missed school days; his parents feared for his life.
Since then, my team in the constituency have experienced all the ups and downs of the journey with Murray and Karen—the hope, the frustration and the disappointment, but always, always optimism that the medication that he needs will be there and available on the NHS. We thought the job was done in November 2018 when, after a powerful public campaign in which the right hon. Member for Hemel Hempstead (Sir Mike Penning) played a pivotal role as a Health Minister, the then Home Secretary, now Health Secretary, the right hon. Member for Bromsgrove (Sajid Javid) made medicinal cannabis oil—the substance on which so many were pinning their hopes—legal.
With your permission, Mr Deputy Speaker, I will elaborate later in a speech, but the crucial thing about when the law was changed was that it was about the prescribed medical use of cannabis oil by a specialist consultant, not a GP. It was not about a spliff behind the bike sheds or anything like that; it was prescribed medical use that saved children’s lives. I agree with the hon. Lady that it is a disgrace we are still here today, debating it.
I thank the right hon. Gentleman for his intervention, and I share his frustration and annoyance. The measure was specifically designed in the way that it was, and it had the support of the Government at the time. The Home Secretary, the Prime Minister and the whole Department for Health team were behind this move, which we thought would change so many children’s lives. Sadly, the job was not completely done, because Murray is still unable to access that life-changing treatment on the NHS. His family have to find the money themselves every month. It is not just Murray; it is not just about his case and his life; it is not a one-off. I stand here tonight for him, and also for all those who know exactly what that feels like.
I congratulate the hon. Lady on securing this debate. I am co-chair of the all-party parliamentary group for access to medical cannabis under prescription, having taken over from my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning). One of my constituents, Maya, is nine years old and has a rare form of epilepsy. Her family are having to pay up to £2,000 a month for medical cannabis, despite the revisions of the guidance. I thank the Minister, my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who is in her place, for the good work she has already done, and I am very grateful for the correspondence that she and I have exchanged, but does the hon. Member for Edinburgh West (Christine Jardine) agree that the Government can do much more, particularly on liaising with clinical commissioning groups to get this medicinal cannabis to the children who need it?
I thank the hon. Member for making an excellent point. The APPG has done astonishing work over the past few years in support of this, but yes, the Government could do so much more for those families who know what it is like to get to the end of every month, and of every prescription, and face the huge bills of which he spoke—up to £2,000 a month. The strain and financial burden of that is all on the families. Surely that is not how any of us in this place anticipated it would be or wanted it to be.
When the then Home Secretary agreed that medicinal cannabis would be legal for use in the United Kingdom, I think we all believed that parents would no longer be forced to watch their children suffer, knowing that a treatment was available. What has happened since is heartbreaking. In the intervening years, they have been forced to source medication themselves, sometimes travel abroad—again at huge cost—to collect it, challenge the medical authorities and face rejection and repeated appeals for NHS prescriptions.
Surely no one in this place wants even to contemplate what it would mean to have a loved one—husband, wife, partner, brother, sister, friend or child—who had to pay for the medication they needed simply to go on with day-to-day life. Think of the diabetic without insulin or the asthmatic without an inhaler; this is no different, but it is new. With so much red tape and inflexible guidelines, too many people face being left alone, helpless and simply unable to afford life-changing treatment. In fact, since November 2018, just three NHS prescriptions have been issued for the type of medicinal cannabis that is life-transforming for these children.
Clearly, guidelines are not empowering medical professionals to do the job they want to do and provide the best possible care for their patients, knowing that they have the establishment’s support. Critics often point to the National Institute for Health and Care Excellence and say it has restricted medicinal cannabis, but only a few months ago it said that there was no ban and that prescriptions should be done on a case-by-case basis. Still parents are told that the medical profession does not have the confidence to prescribe the medication because of a lack of evidence and that clinical randomised control trials are needed. However, that will not work, because this medication does not come in a standard dosage and the balance of ingredients needs to be changed to suit individual patients. Even if medical trials did work, they would be of no use to those children who are already benefiting from medicinal cannabis. Trials would be both unethical and unsafe, because those children would have to stop taking the medicine that is working for them, perhaps for a placebo, and risk a return of life-threatening seizures.
I thank the hon. Lady for making such a powerful presentation with great passion. Does she share my frustration—I am sure she does—that the debate around medicinal cannabis is often confused with people who just want to smoke dope and drop out? It frustrates me enormously, because people such as Murray, Karen and Jorja are all suffering from life-threatening, debilitating illnesses and we are talking about precise, prescribed medical treatments. Unless we can quickly sort out the authorisation of medical practitioners to continue to prescribe to these existing children and patients, we will be in a very dark place.
I could not agree more. We must address that quickly. As the hon. Gentleman said, it should not be mixed up with the scenarios he described; it is often children—adults as well—on a carefully prescribed medication that the Government have supported.
There is also the argument of there being no evidence because of the lack of clinical trials. Well, there is an abundance of observed evidence that medicinal cannabis works, so the clinical trials explanation falls short. There are also those who point to the medicine Epidiolex being available on prescription for two rare forms of childhood epilepsy, but I understand that that is less effective for many sufferers. Scientists say that the medicinal cannabis that these children need is effective for 95% of children.
I thank the hon. Member for giving way for a second time. On that point, one thing I have discovered in the debate is the lack of confidence in the medical profession. In fairness to the Government, they do not have a role at all in enforcing the medical profession’s prescription of medication. Does she agree that the medical profession ought to listen to her and others in the House tonight, put its shoulder to the wheel and encourage its members to listen to the science and help those children across the country who need the medication badly?
The hon. Member makes exactly the point that I would make. I think we all appreciate that the Government do not have the power to make the medical profession do anything, but they can be encouraged to put their shoulder to the wheel and get behind this cause.
I thank the hon. Lady for being generous. Fortunately, we have time to debate this massively important subject this evening, which is what it deserves. The point made by my hon. Friend the Member for South Leicestershire (Alberto Costa), who co-chairs the all-party parliamentary group that I used to chair, is that specialist medics out there are writing the prescriptions, but they are being blocked and regularly threatened by other senior people in the medical profession. They are told, “Even though you are the expert and that would save a child’s life, if you do this, we will stop you.” It is right that it is not a politician’s job. The will of the House is very important, as I will come to in my speech, but if the top-expert clinicians are writing prescriptions, some of which are honoured by the NHS—I will also come to that—and they are being blocked by other medics, somebody has to step in and sort the mess out.
The right hon. Gentleman makes an excellent point. We do have that overwhelming body of observed evidence of the efficacy of cannabis oil. I have seen at first hand the difference that medicinal cannabis has made to Murray Gray’s life—it has transformed his life. When his mum, Karen, first came to see me, he was a very unwell wee boy who was, as I mentioned, constantly in and out of hospital with dozens of seizures a day, and his family were worried that they could lose him. Since being prescribed cannabis oil, he is seizure-free and a happy youngster who plays football with his dad. When he came to visit me in my office, he explained everything I have ever need to know about dinosaurs. It was a joy to see him so happy. The medication has given him a life that he may not otherwise have had.
It is time for the Health Secretary—just as he did when he was Home Secretary—and his team to intervene to make the case that the medical profession should put its shoulder to the wheel. It is time to close the huge gulf between what the Government promised—and, I believe, wanted—and what has been delivered.
I agree 100% with the hon. Lady that we need action now—it is actually overdue—and that the Secretary of State for Health and Social Care is the very person who can give us what we need.
Because this is not a political football kicked between party politicians—it never has been and never should be; we have always resisted that—a little over a year ago, more than 100 MPs across the House from the Liberal Democrats, Conservatives, and Labour and Green parties wrote to the former Health Secretary to demand action.
And the Democratic Unionist party; I do beg your pardon.
Nor is the debate any longer about the proper use or otherwise of cannabis oil. As I have said, the evidence that it is life-changing for those in need is already overwhelming. So it appears that the debate comes down to the willingness of the medical profession. The clock is ticking, however. There are currently only two physicians in this country prescribing the medication, and one of them retires shortly. Add to that the fact that for many families, the Grays included, there will come a time when they cannot afford the medicine their loved ones need and will no longer be able to raise the money. We cannot wait for the creaking bureaucracy of the medical profession to turn.
As we have said, when the current Health Secretary was at the Home Office, he responded to the parents’ appeals, listened and made medicinal cannabis legal. Now the ball has once again found its way into his court and he can help, so my appeal is straightforward. I know a little of it personally: I have had a seizure— I have come to and seen the fear and the relief in the eyes of loved ones—and it is terrifying. What it must be like for a child I do not know. Until a more widespread solution for prescribing can be agreed, and it must be, the Government should save these families the pain of paying for prescriptions. Surely, when the quality of life for a child—so many children—is on the line, it is the right thing to do. I have always been optimistic, and I have confidence that I am right to have optimism and belief that this Health Secretary will take this opportunity.
Order. I remind the House that those who were here from the start of the Adjournment debate—they had to be here for the opening speech by Christine Jardine—are able to make standalone speeches, but anybody else who came in after the opening speech can make interventions, and clearly it is up to the person on their feet as to whether they take such an intervention.
As I said earlier, is it not great that we have a couple of hours to debate this subject, which is so important to the family and loved ones of the children who have suffered so much, and we can do something about that? But is it not a crying shame that we have had this debate not just in this Chamber time and again, but in Westminster Hall as well? It was there that I responded to the debate as the police and counter-narcotics Minister, when I actually said on behalf of Her Majesty’s Government that the Government were willing to look at the prescribed medical use of cannabis for certain treatments, particularly for seizures in children with the very rare form of epilepsy that some have.
There are myriad other illnesses, which we might get to, that cannabis could help, but this is about the closed mind of some members of the medical profession—these so-called experts who took an oath to protect lives and to protect the human beings they are responsible for—who are blocking other medics. As we just heard, fewer and fewer medics are able to prescribe, frankly because in many cases they have been scared off and threatened, or are now coming close to retirement. So what will these parents do? I ask hon. Members in the House this evening what they would do if they were a parent of one of these children. God forbid.
I remember so well Hannah Deacon bringing Alfie Dingley in to see me. Alfie was having in excess of 100 seizures a week. I think the figure was actually greater than that, but that is the figure that sticks in my head. Every time he had a seizure, Hannah and her husband did not know whether he was going to come through it, because all the other medication they were giving him was not working. We have heard this story from constituents around the country, but if I may, I will just concentrate on Alfie for a second. He was given products off-label that were never designed for children to try to help him. Doctors were willing to do that with products that were never ever medicated, designed or regulated for children, but because they were off-label, GPs could write a prescription and they did that on the NHS—trying to keep him alive in that way, while in others blocking the help he could have had.
I praise the End Our Pain campaign of Peter Carroll and his team. They have worked tirelessly over the years, and I will give him a name-check because it is very important that people understand that he has never taken a penny for running such campaigns. There is all the media coverage we have had from lots of famous people, but at the end of the day it is his team who have pushed this. There is the bravery of the parents of these children—some out of desperation. But now, as hon. Members will hear in my speech, they want to make sure it does not happen to other families and other children who are desperate to make this change happen.
I made that speech in Westminster Hall with the full permission of the Home Secretary at the time, who then became the Prime Minister—my right hon. Friend the Member for Maidenhead (Mrs May)—and we started that process. The process then progressed because it was nothing to do with the Department of Health at that stage; this was a Home Office matter. I remember going to No. 10 with Alfie, and he was his usual naughty self, which was fabulous because that is how we want our young children to be to experience life. We were due to meet at No. 10 the police Minister at the time and some of the experts, and my right hon. Friend the Prime Minister came into the room, sat with Alfie and his mum and dad, and talked to them. She said, “We will do something about this: we will change the regulations and the law,” and to her credit, that is exactly what she did. With the help of the Home Secretary, who is now the Health Secretary, we changed the law.
The bit I am so upset about is that if we had not changed the law fully to move this into the Department of Health, other children would be getting the prescription that Alfie and some of the others are getting. They were not given that prescription free on the NHS by the Department of Health; they were actually given it by a committee in the Home Office. We had not moved it across through the legislation, so it was done by that committee, based on evidence that it was going to save the life of this little boy and the lives of subsequent other little boys and girls.
Then we got this impasse. The children got the prescription for free—there are not thousands of children out there; this is a really very rare condition—but when this moved across to the Department of Health, it stopped. They carried on getting their free prescriptions, but even though prescriptions were being written, they could only be written as private prescriptions, and we have heard about the cost of medication for families trying desperately, from all means, to raise the money to get this prescribed medical use of cannabis. There are different types and we could go into the different mechanisms and what is in them, but at the end of the day that is a medical or doctors’ decision, not a politicians’ decision.
Believe it or not, I had to phone the Home Secretary several times and say that there was a family at Stansted airport, at passport and customs control, who were having the medication taken away from them even though it was perfectly legal in this country to have that product. Parents had raised the money and they went to Holland—most of them went to Holland—and saw the specialist, went to the pharmacist and brought it back, and then had it taken away from them. Believe it or not, when we eventually got the authorities to agree to let them have it, they tried to charge the parents for the transport cost of moving the product back to the family. That is ignorance, a lack of knowledge, but we are beyond all that now.
We are now in this situation for the families. I spoke fairly recently to Hannah Deacon, the mother of Alfie. Alfie is what we would expect a boy of that age to be—he can ride a bike and he can have a relationship with his sister that he has never had before, and vice versa. At times he is a naughty boy; hey, that happens. Is that not what we want for our children? Yet families are still in this limbo situation of having to raise money—beg, borrow, I am not going to use the word “steal”, but all of us in the House this evening know where I am coming from; they have to desperately try to raise money. The Government could use their power to buy this product so the families would not have to pay £2,000 for it; if the Government bought the product it would be vastly cheaper as it would not cost the NHS £2,000 per prescription.
My right hon. Friend is making a powerful and passionate speech, and I thank him for his work in the Home Office and in pushing this through. Does he share my frustration that in many other countries around the world, including Germany, manufacturing is coming up to speed and producing well-defined products that could be exceptionally helpful, but because of the impasse we have here among the medical profession it will prove almost impossible to introduce those products here even though, based on the evidence we have, they are perfectly safe?
We are not reinventing the wheel, as my hon. Friend says: we started this but are now lagging behind the rest of the world. The product is slightly different—the oil has different forms of THCs in it. The Minister used to be my Parliamentary Private Secretary all those years ago—how the mighty fall, and how the mighty have risen up the greasy ladder—and she is passionate about trying to help on this, but it is not about Epidiolex; it is about the particular product being prescribed actually working, and it is normally to do with the levels of THCs.
I think this problem might be to do with the terrible word “cannabis” that we use in this country. This is not anything to do with cannabis, really; I wish we could invent another name for it and just say “oil with TCHs in it”, because that would eradicate much of the fear that there is at present—and it is not just fear, it is dangerous to the argument.
I feel a little sorry for the medical profession, because a slight correction should be made. Fifty years ago in the Misuse of Drugs Act 1971 we pretty much classified cannabis as a poison. That is why the medical profession has not felt confident enough to use it, test it and research it; it simply could not. Now we are saying, “You guys have got to catch up and catch up quick,” and the Government have a role to play in facilitating that. Research is kicking off now, which is great, but although some say the medical profession should have been doing that for all these years, it could not do so because this place stopped it. On the right hon. Gentleman’s last point, let us call it “medical hemp”.
I completely agree on the medical profession and know exactly where the Home Office stood when I was at the Department. I would love to say that the whole of the Home Office and my civil servants in the narcotics part of it were thrilled by what I said in Westminster Hall all those years ago, but I can assure colleagues that they certainly were not, to say the least; fortunately, I had covered my back with the Home Secretary.
We need to move on from this, however. This is not about reform of the 1971 Act. It is about whether there is a group of children who we know get benefit from this, and whether, as we all know from our constituency postbags, there are other conditions that could also benefit from this type of oil with a THC product in it. That is where we are struggling.
We need to roll back this debate and talk, as I did at the start of my speech, about children—children who deserve the best possible start in life and just happen to have been born with a medical condition that the medical profession, in its infinite and great wisdom, has not quite got an answer for. This product is part of the answer, although it only alleviates the condition. As parents have said to me on many occasions, it does not take away the condition but it does let the children live a life as close to normality as possible; it is not normal, because it involves dropping oil on a little boy or girl’s tongue on a daily basis, but it is as normal as we can get.
It was a pleasure to serve with the right hon. Gentleman as co-chair of the all-party group on medical cannabis under prescription. On the point he makes about children, we have Bailey Williams in Cardiff, a constituent of my hon. Friend the Member for Cardiff West (Kevin Brennan), and that case highlights that these children are no longer classified as children after four years; they become adults. Bailey Williams is now 18, and the question arises of how things will change for him in a different health system with different rights. What would the right hon. Gentleman say on that?
The hon. Lady was a brilliant co-chair with me for all those years; we agreed on most things even though there is a tiny number of things we do not agree on. The hon. Lady is absolutely right. I have a constituent who has now turned 18, although it is not the THC but another medical component that particularly helps her. People come out of the care of one part of the health service and there is a little bit of a transition period but there is very little research on the evidential base going forward, and we need to do that research.
Let me touch for a second on what has been said to me by senior medical people in the Department of Health and Social Care. They said, “We need to do trials, Mike. We need to use placebos. We need to find out whether this actually works or whether it doesn’t work.” What parent on this planet is going to take their child off a medication that actually works, with the risk that they may get a placebo, have a seizure and die? Is that where we are in the 21st century, really and truly?
We had a statement earlier from the Minister for Covid Vaccine Deployment, my hon. Friend the Member for Stratford-on-Avon (Nadhim Zahawi). We are a world leader in doing medical things. We have done things in this country around the vaccines that no one dreamed possible, yet we are talking about giving placebos—and those people were serious. I can tell the House that the parents were very serious, too. I cannot repeat some of the comments I got from some of the parents, but they quite rightly said—I will speak politely on their behalf—“Not in a million years.” Let us put it in those terms.
I know that the Minister will do her level best, but this is not about the Government taking over Epidiolex. Yes, they need to pay for research—I absolutely agree with the hon. Member for Inverclyde (Ronnie Cowan) about that—and research in this area could change the whole way that pain is addressed and perhaps get us away from using so many opioids, but this is actually just about having trust in the expert who has written the prescription for a child who may well die if he does not get that oil with the THC component on prescription.
I am sorry for intervening on the right hon. Gentleman again. The NHS keeps asking experts, but those experts are not experts in medical cannabis; they are experts in the condition of epilepsy but have no insight into that. Where is the foresight and vision to help these children with intractable epilepsy?
I alluded earlier to the narrow-mindedness of people who have taken an oath to protect people and protect children. No one, I would have thought, goes into the medical profession to hurt people, but at the end of the day, we have a group of children—not thousands, but a small group—whose parents are crying out, “Please listen to my specialist. Please listen to me, as a parent trying to save my child’s life.”
I thank my right hon. Friend for the good work that he did as my predecessor on the APPG. Does he agree that, given that there is such a small number of children across the country who suffer from severe forms of epilepsy, a temporary measure would be for the Government to be bold and simply cover the cost of private prescriptions until we develop the proper framework, along with the science that demonstrates conclusively the efficacy of this medicine?
I could not agree with my hon. Friend more strongly. That was what we did in the Home Office, which is why Alfie and some of the other children got their prescriptions paid for by the NHS. We set the committee up and we did it. I say again that I feel personally guilty, because we worked in all good faith to get the issue across to the Department of Health and it still has it, and those parents feel guilty, because they feel that other children should be having the benefits that Alfie is getting.
Surely, given the will of this House, the will of the Government, the will of previous Prime Ministers, the cross-party support, the fact that the previous Health Secretary came and met the parents here in the House and made them a commitment, and the fact that the Home Secretary who changed the legislation is now the Health Secretary, it must be a no-brainer. Let us look after these kids.
I congratulate the hon. Member for Edinburgh West (Christine Jardine) on bringing this debate forward, and it is a pleasure to follow the right hon. Member for Hemel Hempstead (Sir Mike Penning). He is a man who speaks with great passion for what he believes in, and I have been very fortunate to be able to support him in bringing this issue forward.
I rise to speak about one of my constituents. Darren and Danielle are the parents of little Sophia. I have absolutely no doubt that the reason why Sophia has improved so fantastically, way beyond what we ever hoped, is because of medicinal cannabis. Parents, as parents do, speak for their children and want the best for them. I brought Danielle over here and we met the previous Health Minister, who heard her story for the first time. As a result of hearing that story, he did his best to help us move forward to the next stage. A lot of people have helped. We would never have done any of these things without myriad people, including the right hon. Member for Hemel Hempstead and his friends and colleagues. Sophia is a lovely bright wee girl whose life was a litany of multiple seizures. She is a different girl today because of medicinal cannabis. I am very clear about what I want to see in relation to medicinal cannabis. I see its specific benefit for young people.
I am very fortunate to be a member of many organisations back home. One is the Royal Black Preceptory, and who were there at the side of the road in Newtownards on the last Saturday in August but Sophia, Danielle and Darren? That wee girl, who I had not seen for ages—for a couple of years at least, because of covid—was at the side of the road and she was as bright as a bean. Her mum and dad were pointing me out in the parade so they could say thank you for all we had done. Honestly, what did we do? All we did, really, was what any parent would do for their child, and that is what it is all about.
I thank the hon. Gentleman for giving way and for pointing out just what it means to families to have this opportunity. In my own constituency, Cole Thompson and his mother Lisa Quarrell have really fought and campaigned to pay for this medication. Aside from the financial costs, I hope he agrees that we must also recognise the psychological stress and turmoil we are continually putting these families through month after month after month. It really is incumbent on the Government to address that, because it is simply not fair: it is not fair on the children and it is not fair on the families.
I thank the hon. Lady for her intervention. That is exactly how I feel, and I think it is exactly how we all feel as elected representatives on behalf of our constituents. I can well recall the bad old days of the pressure that was on the family: the pressure on the parents, the pressure on the child and the pressure on their friends, with all the multiple issues they had to address. There is an evidential base. It is as clear as a bell. I can see it in that wee girl Sophia. I can see it in the improvement that she has quite clearly made. That is why I totally support this product. I believe the evidential base is overwhelming. I can vouch for that, as I see that lovely wee girl and the improvements she has had.
My hon. Friend the Member for Belfast East (Gavin Robinson) sent me a letter, which I will record for Hansard if I can, written by his constituent, a fellow called Robin Emerson, whose daughter is a wee girl called Jorja. There is also an evidential base in her improvement. My hon. Friend very kindly gave me a copy of the letter last week, which refers to
“an important intervention to enable a number of children suffering with epilepsy to receive a treatment containing Cannabidiol (CBD) and Tetrahydrocannabinol (THC). This has made a crucial difference to their quality of life over the past two years”.
In some cases, quite honestly Mr Speaker, I believe they save lives. They definitely do. In my heart I believe that, which is why I am here tonight to speak on this matter. I feel it is so important.
I thank the hon. Gentleman for giving way on that point. Does he agree that there is no other medical intervention suitable for these children? It is intractable epilepsy. Nothing else has been found to give them that quality of life. Does he agree that we have to move forward in this debate?
The hon. Lady is absolutely right: we do have to move forward, and that is the message from us all in the Chamber tonight. I know that Robin, on behalf of Jorja, and Darren and Danielle, on behalf of Sophia, tried almost every other thing that they could before they came to medicinal cannabis, and they have seen the difference almost right away.
I am sorry to come back in because I did speak at length, Mr Deputy Speaker. Some of the medics have tried all the other medications. Many of those, as I alluded to in my speech, are completely off-label, were never intended for this and have not worked, but they are willing to block the medical use of cannabis oil with THCs. Why?
I bow to the expertise of the right hon. Gentleman and I wholeheartedly agree with him.
We need the Government and the Minister tonight to give us an assurance that they will cover the prescription beyond September. The letter I referred to asked the Government
“to clarify the guidance which enables children…to continue to receive this vital treatment”
via their GP
“under guidance from a specialist and funded by the NHS.”
The clinical trial for a treatment manufactured by MGC Pharma, which is due to begin in the autumn, was also referred to. Until that happens and until those trials are completed, we really need to recognise the proof that each of us as MPs have, on behalf of our constituents, and confirm that medicinal cannabis improves quality of life.
I also want to mention my sister and her son, Jake. Jake never had medicinal cannabis when he was young. I wish he did, because I tell you what: I can see the improvement that he would have had at a very early stage, which he does not have today because of all those years of epileptic fits. It grieves me greatly to realise that the opportunity that Sophia and Jorja had was something that wee Jake did not. If we had had that years ago, perhaps his improvement would have been much greater.
I support the hon. Member for Edinburgh West tonight and the right hon. Member for Hemel Hempstead and everyone else who will speak afterwards, including in interventions—I thank all those who have intervened. We are all united tonight on retaining medicinal cannabis for our constituents. We as MPs, on behalf of these parents and children, can see the evidential base, and what an evidential base it is. We always say, “Let’s have the evidence.” Well, we have the evidence. We have it individually and on behalf of those families, and tonight, I look to our Minister to give us the reassurance that we need on behalf of our constituents back home.
I congratulate the hon. Member for Edinburgh West (Christine Jardine) on securing the debate and on her brilliant timing in doing so on an evening where we can debate not only the narrow issue being focused on by the wonderful campaign End Our Pain—the plight of these epileptic children. I do not have one of those children in my constituency, but a number of us do, and by goodness, if I did, I absolutely would be championing their cause. However, this discussion also needs to take place in the context of the whole debate about medicine and how we need to improve our nation’s and people’s access to medicines that work.
My right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) was behind me on the day that I asked the urgent question that followed the march and the petition that we presented to Downing Street. It was when he leaned over to me in the Chamber and said, “We don’t agree about very much, Crispin, but I support you on this,” that I realised that what I would have regarded as the Taliban, as far as drugs policy was concerned, had come on side. With enthusiasm, we embraced my right hon. Friend’s help because of his influence with the Prime Minister. Having worked with him, I will not disguise the fact that we come from a very different place on wider drugs policy; he managed to get me a splash in The Sun when he was taking the Psychoactive Substances Bill through the House, which was my moment of notoriety in the Chamber. However, the context of what we are considering today is a drugs policy in the United Kingdom that is nothing short of catastrophic.
We need to work towards creating institutions that can advise the Government with evidence, authority and expertise. The truth is that we have proceeded with drugs policy for more than five decades on the basis not of evidence, but of reputation and what people think—exactly what my right hon. Friend was saying about the implications of the word “cannabis” and what people adduce to it. We have not proceeded on the evidence.
I thank the hon. Member for making that point, because if we were to adopt the same approach with opiates, we would be giving people “heroin” as pain relief: we call it morphine, but it is heroin by another name. If we continue to talk about medicinal “cannabis”, stigma will continue to attach to the part that gives a hallucinogenic effect. That is the part that everyone will focus on unless we start to change the direction, the language and the naming, which is why the medical profession is blackballing it on every occasion.
The hon. Gentleman has landed on the core of the problem: the reputational issues that we are dealing with.
We owe it to our constituents to do just a little better. We owe it to them to try to understand the evidence and create institutions that will advise our Government based on the evidence. We have a duty not to be stampeded by the popular press in a particular direction about the particular meanings of words, but we have done so for 50 years in regard to cannabis: it was shoved in schedule 1 to the regulations made under the 1971 Act, which governed the most dangerous narcotics, and we kissed goodbye to 50 years of understanding within the medical research sector of what might be possible.
We were then left with the situation that we faced in 2017: after my two and a half years’ experience as prisons Minister, the evidence was plain throughout the entire justice system, as it is today, that our wider drugs policy is an unqualified disaster. We have watched the frog in the pot as the temperature has risen and risen over five decades; it is now boiling over and shreds are coming off. We have the worst drugs death rate in Europe and our drugs policy has dominance over the criminal justice system, driving half of acquisitive crime in the UK. Those issues elide into the narrow issue of medicine from cannabis, but we owe it to our constituents to understand the context.
I say this to the Minister particularly: if we can get the change of approach right, there is a huge opportunity. It is not just about the magnificent campaign by End Our Pain and my right hon. Friend the Member for Hemel Hempstead for the 17 identified epileptic children and their families, although of course there are duties that we all owe to them, and they raise the question of what we would do in their position. I was in the Chamber when my right hon. Friend said that he and Frank Field would be at customs to deliver the bottles of medicine—and an absolutely splendid occasion it was, too.
It is not just about epileptic children; it is also about people with multiple sclerosis. An estimated 50,000 people in this country are growing their own medicine, at peril of a 14-year prison sentence, all to try to make themselves better. From those 50,000, there is a huge amount of research evidence, all of which is lost to the legal system: people are growing particular plants and adjusting the exact balance of the cannabis product that they produce to best use for their condition.
My hon. Friend is making a powerful speech. I have chaired the Parliamentary Office of Science and Technology, and it seems to me that medicines generally arise because of people’s behaviour beforehand. People were chewing bark because they felt that it relieved pain, and now we have aspirin. I think that much of the development of medicines—very precise and targeted medicines—comes from the experience of people and what they do themselves. As my hon. Friend says, there is a body of evidence, and it is a matter of collating that evidence, but it is also a matter of the people who adopt these methods at an early stage taking on a risk for themselves, and we should use the information and evidence that we gain from that to build on the scientific knowledge that we have.
I was delighted to take that intervention from my hon. Friend. He is absolutely right: this is about science and technology. It is about finding a route to a Government who can deliver policy based on evidence. We have heard very clearly why randomised controlled trials and placebos are not going to work in this case and are a completely inappropriate way of providing proof, and that there is a vast amount of observed evidence out there. What we need to do is understand the context. The case is unanswerable for these epileptic children—of course it is, and of course their treatment should be should be paid for privately if it cannot be provided by the NHS because all these barriers have appeared—but behind them sit a vast number of other people who are not being served by our system of developing drugs that will work for their conditions.
The hon. Gentleman has made some very valid points about the wider issue of drug reform, and I agree with much of what he has said. As he well knows, when I first came to the House the late Paul Flynn, then Member of Parliament for Newport West, was a doughty campaigner for medicinal cannabis. I had many conversations with him about it, and much account was taken of what he said. He advanced valid arguments about people with multiple sclerosis, many of whom were our constituents, and I believe that the hon. Gentleman too has a genuine argument in that regard. Tonight, however, we are focusing on the cost of medicinal cannabis to end the pain of epileptic children, and our real ask of the Government is a fund to provide them with money immediately, although we will work together on the wider debate.
I wholly agree with the hon. Lady, whose leadership of the all-party parliamentary group on access to medical cannabis under prescription, along with that of my right hon. Friend the Member for Hemel Hempstead, adds to the whole discussion and illuminates the fact that our drugs policy is in a serious state of strife. It is not based on evidence, and we have to drag it in that direction. Behind the hon. Lady sits my friend the hon. Member for Manchester, Withington (Jeff Smith), with whom I have the honour of co-chairing the all-party parliamentary group for drug policy reform. We took over from the hon. Member for Brighton, Pavilion (Caroline Lucas) and from Paul Flynn. My objective, as the first Conservative to take his place, was to drag this conversation into the mainstream, which is where it belongs.
However, we need to remember just what got this over the line in the first place. The Dingley family behaved perfectly within the rules. They made applications and everything else, and indeed we had an urgent question on the subject. I remember my right hon. Friend the Member for Hemel Hempstead interrogating the then Policing Minister, who had taken on the responsibility, about when this was going to happen, particularly for Billy Caldwell.
What got this over the line, however, was the fact that Bill Caldwell’s mum, Charlotte, was brave enough to obtain the medicine in north America, present it to customs and have it confiscated. Her son was then hospitalised and was fitting, and within three days the overseeing consultant was on the steps of the hospital saying, “I do not care about what is going on here; it is unbelievably cruel to take a medicine that works away from a child.” The following day, the then Home Secretary—now, wonderfully, the Health and Social Care Secretary: what a brilliant repositioning that is—authorised the return of Billy’s medicine, or at least some of it, from customs so that he could receive his treatment.
While we are name-checking colleagues, we should mention one chap who is not here because he has left the House, and that is Frank Field. My hon. Friend referred to Frank—[Interruption.] Oh, he is in the other House now, is he? Lucky fella! Frank and I were absolutely adamant that the following day, we were going to go to Holland and come back, and that unless a change to the legislation had been indicated the following day, we would be arrested. But what a great reason to be arrested, trying to save someone’s life! It was Frank’s idea, and I jumped on with him—we should also acknowledge other people including Billy Caldwell’s family and Alfie’s family; I completely agree with that—but without Frank jumping in as well, we would really have struggled.
This is where we come to the cost, to which the hon. Member for Gower (Tonia Antoniazzi) drew my attention. In order to get Alfie Dingley’s prescription over the line, it would have taken £5,000 for the person who was going to make the application, who happened to be on holiday in the Galapagos Islands and who then had to be interviewed by Home Office officials before he was allowed to make the application; £5,000 for the pharmacy to get a licence to bring it in; £5,000 for the pharmacy then to hand it out to the doctor; and then £5,000 for the licence for the prescribing doctor. I mean, I ask you! It might have been possible to pay in that case, but behind the case of Alfie Dingley, there is not just a score of epileptic children.
On that point, I made two journeys to The Hague with families—out of my own pocket, which was absolutely fine; it was not funded by anybody—because they needed the support to go over and get those medicines. They do not have the extra money and they do not have the time, which is why we stand by them and why we have to help them.
The hon. Lady has behaved as the best of constituency MPs would. Indeed, I am sure that all of us, faced with the opportunity to help people in that way, would want to do so.
I say to my hon. Friend the Minister that, despite the legalisation in November 2018, the system remains broken. It remains broken in respect not only of cannabis but of the psychedelics. A wave of interest came into medicine as a result of cannabis; it came from North America where a significant amount of investor money was going into the new industry because people could see the opportunities that were available there. However, we could not do the research here because it was a schedule 1 drug, and hardly any universities had a schedule 1 licence to do that research. The level of oversight was far greater than that for heroin, as the hon. Member for South Antrim (Paul Girvan) said, so it is no wonder that there has been almost no research on all this down the decades.
As far as I can see from the 1960s, the psychedelics got shoved into that group as well because pop stars used them. Then, in 2008, we managed to dismiss the chairman of the Advisory Committee on the Misuse of Drugs because he had the presumption to say that riding a horse was a damn sight more dangerous than MDMA. That is what we do to the scientists who produce the evidence: we refuse to listen to the evidence because it will be politically inconvenient and subject to misrepresentation in the media. We owe our constituents way more than that, and it would be remiss of us if we do not examine this whole area on the evidence. I implore my hon. Friend the Minister to listen to it.
I have spoken about MS, and the hon. Member for South Antrim and others have referred to pain relief. As an alternative to opiate-based medicines, given all the difficulties of the opiate crisis in the United States, cannabis-based medicines offer a serious group of advantages if they can be deployed properly. Meanwhile the psychedelics still sit in schedule 1, making research incredibly difficult and expensive.
Let us consider depression, addiction and trauma. Of the veterans who have come back from their service in Afghanistan and Iraq in recent years, 7,500 have post-traumatic stress disorder, about a third of whom are beyond treatment within the current treatments available. However, the evidence is that the prescribed and overseen use of psychedelics can get to the relevant part of the brain and enable the psychotherapy to take hold and teach people to acquire the tools with which to manage and deal with their trauma. That can also work for depression and addiction. We are potentially talking about millions of people, if we enable the research to happen. Are we a country that will be on the frontline of bioscience? Are we serious? There is an opportunity for our pharmaceutical industry to get this to scale, and millions of people can be helped.
A huge cost is currently imposed on our economy by these medical conditions, so surely it makes sense to enable my hon. Friend the Under-Secretary of State for Health and Social Care, as Minister for medicines, to draw on evidence-based advice. Sitting alongside the MHRA ought to be some kind of cannabis authority, as has been done in Denmark, Holland and Germany, for Ministers to get the advice they need to be able to advance policy confidently, and it needs to be within a wider office for drug control that engages all the relevant Departments. A Department of Health and Social Care lead would be good, but a Cabinet Office lead that brings together everyone who has an interest in this area would be a fine thing, too.
I thank my hon. Friend for giving way, although I do not entirely agree with all his views on the legalisation of drugs. I was shadow Minister for Science back in the day when Professor Nutt was forced to resign for making comments that were factually accurate, and the House is now very different. I feel quite optimistic today, like the hon. Member for Edinburgh West (Christine Jardine), because I sense the mood of the Chamber and the Secretary of State for Health and Social Care. If there were some mechanism to bring in the clearly available research on people who have already been using these refined substances, I think the Government and this House are in the mood to take those views on board.
I largely agree with my hon. Friend, apart from on the views he imputed to me. He decided what my views are on the legalisation of drugs, but I simply want policy based on evidence.
All I will say is that the current situation is a catastrophe, not just here but around the world. It is the basic reason why we were run out of Helmand province. The farmers around Didcot were growing poppies for the legal medical morphine market, but we did not allow the farmers in Helmand to grow poppies, so they were driven into the heroin market. We then decided to go and burn their crops, reducing them to penury. And we wonder why they changed sides and were against us. We were run out of Helmand, even with 20,000 American troops coming to the aid of our soldiers.
This issue permeates the world. It is a global issue. We simply need to proceed on the basis of the evidence, so we need to create the institutions that can give us that evidence. There should be an office for drug control, promoting all the science and bioscience of which this country should be capable, within which ought to be a cannabis authority of some kind that could give the Minister and her colleagues the advice they need. The opportunity for the Department of Health and Social Care is huge, and the opportunity for the Department for Business, Energy and Industrial Strategy in sponsoring our science is enormous. The opportunity for the Treasury is not exactly minuscule either, and there is an opportunity for the Home Office to have a policy that contributes to the whole of the public interest, not just a very narrow part of it that has done so much damage. The policy of preventing things from happening has been in the lead in the drugs policy area, so this proposal is long overdue.
I beg the Minister to have this discussion with me and the think-tank I have established. I have no financial interest to declare, as I take nothing from the Conservative Drug Policy Reform Group. I set it up to give me research and scientific evidence on which to help advance these arguments. I am passionate about this issue, and it is one of the issues on which I wish to use my remaining time in public life. Having seen what I have seen as Prisons Minister and in my own experience, I know the opportunities are as great as the opportunity to end the terrible mess of our wider drugs policy. If we can grasp the science opportunity, the medical opportunity follows. There would be a huge advantage for patients in the United Kingdom.
The work the hon. Gentleman does with his think-tank is brilliant. How much would this cost? How much does he think the Government need to put aside—we are talking about the cost of medicinal cannabis—to reform policy? Are there any figures? Are there any plans to put that in place?
The machinery of government changes can be made at very little cost. This is about getting the right advisers and the machinery of government advice. Obviously, we would then have to recruit the people into the cannabis authority who understand the issue, and allow them the authority and space to be able to advise Ministers and the office of drug control. However, the up-front cost would be minimal. The opportunities and the number of people we can really help by having far better drug provision in the UK are huge. All of us have a duty to engage properly with that and to be able to disaggregate all the issues and negative connotations associated with the use of cannabis and heroin. Let us focus on the evidence and get this conversation into the mainstream as a means by which we can make huge advances for our country. I look forward to the ongoing conversations with the Minister, who as the Minister for medicine could make a huge impact if she were able to deliver on this part of her agenda.
Thank you very much for calling me, Mr Deputy Speaker. I just jumped up quickly before you changed your mind! [Laughter.]
I thank the hon. Member for Edinburgh West (Christine Jardine) for securing this debate, which has been great; we were looking forward to a 30-minute Adjournment debate, a battle through and a quick exchange of views, but because nobody cares that much about national insurance contributions amendments, we have been given this extra time. I will not take too much more, because a lot has been covered by the previous speaker and there is no point going over old ground. I would genuinely like to say that at 9.10 on a Monday evening there is nothing I would rather be doing on my birthday than fighting the cause of something I truly believe in.
On 19 March 2019, the then Secretary of State for Health and Social Care said that medical cannabis “would be made available”. If I had heard those words as the parent of a child who would have benefited, I would have been thinking that it was going to be made available. I would not be expecting to jump through hoops or to have to raise thousands of pounds to pay for it. My hopes would have been raised. A child with such a condition would, typically, have 30 seizures a day and so over 900 days we are talking about 27,000 seizures. If they had had medical cannabis, we could be talking about zero seizures. However, it will be made available some day. After this time, the general frustration in this Chamber is, “Why are we still talking about it?” We have said this a number of times in Westminster Hall, and here and there, and we know everything that has been said today.
I am genuinely glad that the Minister has informed us that we are now manufacturing some of these medicines here in the UK, as that is a big step forward. However, we are still reliant on private prescriptions and, as was pointed out earlier, the main provider of those is about to retire. Yet again, if I was a parent in that situation, would the sword of Damocles not be hanging over me? This is the same idea as what happened when we left the EU—we could not get the medicines in and we had to have an extension to January, to July and now to next year. That is a ticking timebomb hanging over those young lives that we just do not need to have there. The long and short of it is that people who cannot afford it or cannot raise the funds for it—during covid, raising funds for many a charitable cause has been incredibly difficult—simply go without. They go without and so there are 27,000 seizures because they have to go without a medicine that they know is available and know would do the job for their child. It should not be this way. In less time, we have developed, tested and rolled out a covid vaccine throughout the United Kingdom. The vaccine did not exist, it had to be tested, and we have done it. It concerns me that these kids are less of a priority.
What are the UK Government going to do? How will they finally going create a legal framework in which GPs are comfortable writing prescriptions for cannabis-based medical products? If we could do that, it would be a game-changer. I am not playing politics with this issue, but I have contacted the Scottish Government, and in Scotland if people get an NHS prescription, the Government will pay for it. The same thing has to apply down here, so let us facilitate that. Let us go to doctors, explain what it is we are asking them to do and give them the confidence to stand up and do it. If a senior clinician can do it, a GP can do it.
The point the hon. Gentleman is making is really interesting. With covid, we have seen so many families really struggle and their children have been hospitalised—we are talking about such vulnerable children—so his point is so valuable. I thank him for all his work on this issue because together, across party lines, we will take this issue forward.
I thank the hon. Lady very much. The point that this is very much a cross-party issue should not be missed. We are not going to split down party lines or fall out over this. We will fall out over other things—I am absolutely sure of that—but this issue has strong cross-party support. I look around the Chamber at the Members present and I know the different politics we have, yet we are united behind this cause. The Government should take real note of that. I know they have a working majority of 80 or so, but people in the Conservative party are rightly backing this issue.
I shall not keep the House any longer. I fully acknowledge that the past 20 months have been incredibly demanding for the Department of Health and Social Care. We all get that—we all appreciate what has been done during that time—but the time for talking is well and truly over and the time for action has well and truly arrived.
First, I congratulate the hon. Member for Edinburgh West (Christine Jardine) on securing this debate. I agree with colleagues’ comments: it has been incredibly helpful to have time to talk about this issue. As I sat on the Front Bench, the debate highlighted to me, first, the needs of these children and their families, and secondly, the complexity of the whole situation. We can make statements, but there are no easy solutions. This issue involves the medical profession, licensing and trials.
Let me thank all those who have contributed to the debate. In no particular order, so as not to upset anybody—I have met many of those who have contributed on numerous occasions—I thank my hon. Friends the Members for South Leicestershire (Alberto Costa) and for Windsor (Adam Afriyie), and the hon. Members for Strangford (Jim Shannon), for Gower (Tonia Antoniazzi) and for South Antrim (Paul Girvan).
I thank my right hon. and learned Friend the Member for Kenilworth and Southam (Jeremy Wright), who is not in his place but with whom I have met. As is the constituency MP for Hannah Deacon and Alfie, he has contacted me and spoken to me on several occasions.
I thank the hon. Members for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) and for Inverclyde (Ronnie Cowan), to whom I shall not forget to wish a happy birthday.
As my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) said, we have known each other a long time and I have carried his bags on more than one occasion—
Not no more, but I understand where his passion comes from.
I can also see in their places the hon. Member for Manchester, Withington (Jeff Smith)—we have spoken about this matter—and my hon. Friend the Member for Reigate (Crispin Blunt).
At the heart of this debate for me are Alfie; Billy; Eddie Braun, who was not mentioned; Murray; Jorja; Maya; Bailey Williams, mentioned by the hon. Member for Gower; Sophia; and others. It is about those children. I have personally met several of the families and heard at first hand how it feels not to be able to have anything more. To be honest, as a mum of four, I can say that sympathy feels a bit useless when it comes to a mother who, in some cases, can watch their child fit 100 times a day. They have explained to me the relief that applying Bedrolite under the tongue brings to their children. They have spoken about the financial challenges, but I would like to use the time available to go over some of the challenges that I am trying to wrestle with to get to a solution.
We have had an accordion debate tonight. Initially, the hon. Member for Edinburgh West said that this debate was about access to NHS prescriptions. However, many others also spoke about how much this might benefit multiple sclerosis sufferers and those with chronic pain. Indeed, Lord Field in the other place has written to me on this subject and spoken about the relief of chronic pain that I think he himself gets from using a cannabis-based product. However, there does have to be an evidence base that is more than observational.
There has been a lot of talk about randomised control trials this evening, and I understand the difficulty that the NHS has with this. We have had numerous meetings with NHS England and with pharmacists on this. The issue is that the RCTs are a no-goer. They are just a no-goer. I would never take my child off a drug if I knew that it could possibly kill them in order to enable the NHS to prescribe. We have to overcome that hurdle. I would like to see a push from the Minister to make that change happen. We have seen it with covid and we have seen it with the vaccine. What the NHS has done is incredible. I would really love to have the Minister onside to be able to push the NHS forward to change its mind over the RCTs.
I understand that point and I have said to those parents that I would struggle. In fact I would probably find it impossible to offer my child something else when they were already gaining relief from something. However, as we have debated here today, there are probably two issues here: the treatment of those children who are already on Bedrolite; and the need for an evidence base, particularly when we start to talk about expanding the use of cannabis medicines for those suffering from a large range of other medical issues, be it MS sufferers and so on. This is where the challenge comes. Clinicians rightly want to prescribe based on the evidence so that they do their patients no harm. Many people have said that this is the place of last resort for these parents, but we have this difficulty.
I have two points. The first is that it is not all Bedrolite. A lot of these parents do not have Bedrolite. There are myriad specialist ones with different THC levels, but they have been prescribed by a consultant. I know what my hon. Friend said, but these are consultants, and they do want to prescribe the drug and they have prescribed it, but they are not allowed to put it on an NHS prescription unless you are Alfie, Billy or any of the others. It just does not make sense.
I agree that there are other medicines, but one of the challenges is how we treat people with ongoing needs as their conditions vary, if we do not have the ability to understand how the body is responding.
I will push on a little bit. Let me provide an update on Bedrocan oils from the Netherlands. As stated previously, the commercial agreement between Transvaal Apotheek and the UK special medicines manufacturer, Target Healthcare, is progressing. The Medicines and Healthcare products Regulatory Agency and the Home Office are working with those companies to ensure that all regulatory standards for manufacturing these medicines in this country are met. We continue to work closely with the Dutch Government, Transvaal, the Home Office and the MHRA—which I have met with and which says it will look at the international evidence—to ensure continuity of supply until domestic production has been established. We have had movement; I can sense the frustration in the House tonight, but we are moving forward. I will continue to keep the House informed of progress.
On the main topic of the debate, it is undeniable that it is incredibly hard for many of the patients and their families. As many Members have said, the challenges have done nothing but worsen during the covid-19 pandemic. The Secretary of State for Health and Social Care, my right hon. Friend the Member for Bromsgrove (Sajid Javid), when he was Home Secretary, changed the law to allow unlicensed cannabis-based products for medicinal use to be prescribed by doctors on the General Medical Council’s specialist register. This removed legislative barriers to legitimate use as a medicine. However, there is still caution across specialists in their ability and willingness to prescribe. [Interruption.] Indeed. However, with respect, if the prescribing of these medicines by a clinical specialist was that seamless, we would have more of it, but we do not.
The whole thing comes back to the fact that clinicians want to rely on an evidence base, and that includes clinicians in Scotland. We recently received a letter from the Scottish Government, outlining that Dr Rose Marie Parr, former chief pharmaceutical officer, had chaired a teleconference with key paediatric neurologists from specialist centres. The clinicians had a clear and united view that, following the GMC and British Paediatric Neurology Association guidelines, they would be unwilling to prescribe CBPMs containing THC, including Bedrolite, until there is clearer, published evidence available following a clinical trial.
All three Members rose at the same time. I will make my next point before I take interventions.
While the evidence base remains limited, I am sure that everybody, including clinicians in this place, will agree that decisions on whether to prescribe, as with any other medicine, have to remain clinical decisions. A doctor would not appreciate me in their consulting room telling them that they did not know their job as a doctor.
I thank the Minister for giving way again. I would just like to point out to her that that is not the case. There are three NHS prescriptions. If the law was changed, why are there those three NHS prescriptions? Either these medicines are safe or they are not. They must be safe. I understand what she is saying about the clinicians, but let us look at the risk-benefit for the particular group of children we are talking about. We know that “First do no harm” is how our clinicians treat their patients, but they have to move forward. Hannah Deacon is a classic example. She is continuing to campaign because she sees the unfairness and injustice that Alfie has his prescription but other children do not. Please, Minister, help us to move this debate forward.
Hannah has said those exact words to me. That is why I say that we have to look at this in a selection of doable, achievable pieces, because it is not possible to look at it for every condition. We are talking about those children with refractory epilepsy, and trying to find solutions there is my main focus currently.
I am not a medical person; I am a parent. I think back to the start of covid-19 when we were told that it would take years to do the clinical trials and to do everything that was necessary to have a safe vaccine, but now we have it, and a successful roll-out, because there was the will to do it—to think out of the box. I think for many people the frustration comes from the question of why the medical profession are not being encouraged to look at an alternative way of finding the reassurance that will enable them to be looking at the observational evidence from abroad and taking it on board. They will be looking to the Government to encourage them to do that.
I would like to reassure the hon. Lady that we do look elsewhere, but it fundamentally comes back to the fact that observational trials on very small cohorts are not the best way to develop the policy, going forward, to treat these individuals. That is notwithstanding the fact that the observations of all the parents I have met, and others who have seen their children benefit, are the foundation for making us try to put our shoulders to the wheel in order to do better. I think there is that tension.
Looking across other countries, my hon. Friend the Member for Windsor (Adam Afriyie) said, “If they can do it, why can’t we?” What is needed to support routine prescribing is the evidence base of safety and efficacy, public funding and cost-effectiveness. This is the system that we use in the UK for all medicines and medical devices, and it is really difficult to see a case for why cannabis should be treated differently from that on a broader spectrum, particularly when we take into account the comment by my hon. Friend the Member for Reigate (Crispin Blunt) that there is a need to look at how these medicines may help others suffering from chronic pain. I have been told that multiple sclerosis and palliative care are other areas, and so on. If we are going to broaden this, then we must look to do the job properly.
I thank the Minister for grappling with what is a very complex matter. I totally understand what she is saying. I can understand some clinicians’ reluctance because they do not want to prescribe something when they do not know what is contraindicated in relation to other conditions and they do not want to do harm. But this must potentially be done where the children are already benefiting from some kind of expedited process to ensure that they can have the prescriptions and that parents are not having to try to fund that in so many different ways, causing that stress. There must then be some kind of expedited clinical trial that shows that clinicians more broadly can have the confidence that they are prescribing medications that will support conditions, do no harm and would not be contraindicated or cost children or adults their lives if prescribed to the wrong individuals.
I thank the hon. Lady because she encapsulates in a nutshell what the challenges are. This is extremely difficult without that knowledge of what the contraindications are. I was trying to suggest, perhaps not as eloquently as I could have done, that we need these different bits in order to make the policy work. As the House has heard, the current Health Secretary was the Home Secretary when he changed the law, and at our very first meeting, he told me it was one of the things he was very keen to see us move forward on.
I am going to make a little progress, because at this rate we will go up to the end of the time. I will come to my right hon. Friend the Member for Hemel Hempstead.
While saying that it should remain a clinical decision for doctors—indeed, that was very much what I took from the hon. Member for South Leicestershire, because it would be inappropriate for Ministers in Whitehall or the Scottish Government to influence individual prescribing decisions—with the exception of three licensed medicines, cannabis-based products for medicinal use are not first-line medicines and are not routinely funded. Most cannabis-based medicines are unlicensed medicines, and that means they are yet to have their quality, safety or efficacy assured by regulators here or, indeed, anywhere else around the world. Nor has their cost-effectiveness been decided by the National Institute for Health and Care Excellence, which is how we administer medicines. Those are the foundations of NHS decisions about routine funding. The cost of treatments sought privately remains the responsibility of the patients, and I am not cloth-eared to how difficult that is and why we need to try to find a solution.
The Minister is being very generous, although we have plenty of time. I think we have until half-past 10, Mr Deputy Speaker, should we or you wish. I have two questions. The hon. Member for Gower (Tonia Antoniazzi) asked a specific question: how is it safe on the NHS for three prescriptions to be given to three children, paid for by the NHS, but not any others? Is it safe, or is it not? The Minister referred earlier to clinicians not having the confidence to give the prescriptions. Is she aware that one of the clinicians was reported to the General Medical Council for writing a prescription and was exonerated? That is why they are scared; they are scared for their careers. How can it be safe for three children, but not the other children whose lives can be saved?
I thank my right hon. Friend. I have met clinicians, as well as the families. Like just about every other area of medicine, there is divergence in how they approach it. There are those who prescribe and those who do not. I have also spoken to Alfie’s general practitioner, who was very articulate in describing the benefits that Alfie saw from taking medicinal cannabis. However, it is still fundamentally the decision of the clinician who has the child as the patient. One thing that has been said to me is that it is important, as we try to move forward and do better, to ensure that private specialists also have conversations with those who are treating the children for other issues in their NHS care, because of contraindications and so on, as was referred to earlier.
I thank the Minister for being so generous with her time. The right hon. Member for Hemel Hempstead (Sir Mike Penning) has made a real point about there being a culture of fear within the NHS and with clinicians, who are too scared to prescribe because they do not know what the consequences are. The Minister has a role to play here in enabling them to have the confidence to prescribe and work with the drug that we refer to as cannabis. In this House, we should not be using the word “cannabis”, because it strikes that fear into the hearts of many, many people across the UK. Most other drugs have a single active ingredient; medical cannabis has many. If the Minister does not accept that randomised control trials are not applicable, we are in a Catch-22 situation and we are forever stuck. This is not acceptable.
I do not believe we are stuck, but we should proceed with caution. I think that is a totally acceptable way to go on. I think it was the hon. Member for Edinburgh West who asked why it is any different from insulin or the other drugs she listed. It is different, so we must proceed with caution.
One minute. The cost of parents accessing private treatments remains the responsibility of patients. I am aware that the cost remains high and has brought immeasurable hardship to some families. However, the Government cannot stipulate what companies charge for these products. Furthermore, these are controlled drugs that are specially manufactured or imported for the treatment of an individual patient with an unmet clinical need. In such cases, there are also international treaties with which we have to abide, which mean that companies exporting or importing controlled drugs incur fees to support the necessary governance processes.
We have done an enormous amount within the constraints of the treaties to reduce the costs, making clear what the rules are about and how much can be imported under each notification, and allowing licensed importers to have a small additional supply so that children can get hold of a supply. The supply can be drawn from when a prescription is given by a specialist doctor, reducing the amount of time that a patient might wait for their medicine and helping to ensure continuity. However, the export of finished Bedrocan oils from the Netherlands is currently restricted under Dutch law, so the latter change does not apply to those products. The licensed cannabis-based products Sativex, nabilone and Epidiolex, for which there is clear evidence of safety clinical trials and cost-effectiveness, are provided routinely on the NHS for their licensed indications. Indeed, last month, the licensed indication for Epidiolex was expanded to those with tuberous sclerosis complex. I have heard from parents who have tried some of these drugs and found them not to be successful for their children, but it is important that as we build a better reference for cannabis-derived medicines, we have a suite of products that we can draw on.
I thank the Minister for giving way; she is being incredibly generous with her time. I would like to say, however, that when I referred to insulin and inhalers, I was not comparing medicine with medicine; I was talking about the principle of having to pay for something that makes such a fundamental difference to people’s lives, and how families are having to pay when, as other hon. Members have said, NHS prescriptions have been issued.
One second. On the expansion of Epidiolex, NICE will work with the manufacturer to assess the clinical and cost-effectiveness of the medicine in the indicated patient group before making recommendations for routine prescribing and funding on the NHS. That is the proof. Where there is the will and investment in clinical trials, cannabis-based medicines can achieve the medicinal licence that is the gateway to routine funding. They have become a useful tool for clinicians in treating diseases where other licensed treatments have failed, but the licensing process also provides for the development of the evidence and information that doctors rely on to support their treatment decisions, as was laid out by my hon. Friend the Member for Reigate (Crispin Blunt). The MHRA is well equipped to provide advice to any prospective applicants wishing to conduct clinical trials or marketing authorisations. Indeed, there have been 13 trials ongoing in the UK in the past 12 months, and six other trials of this type of medicine have been completed.
On refractory epilepsy and the children we are specifically interested in tonight—that is not to exclude any other patient group—NHS England, NHS Improvement and the National Institute for Health Research have confirmed in principle support for two randomised control trials on early onset and genetic generalised epilepsy. These will compare medicines that contain cannabis oil, CBD only and medicines that contain CBD plus THC with placebos. While, like many other projects during the pandemic, there have been delays on commercial discussions, these are nearing completion. Once supply contracts have been finalised, the study team will be able to initiate the formal trial set-up process and confirm a date for patient recruitment. This is a pioneering area of research, and we are keen to support patients by progressing these trials as soon as possible. I feel keenly the frustration that they have taken so long, and I hope to be in a position to make a further announcement on these clinical trials in the next few weeks.
The Minister is being very generous in giving way, and I know she wants to find a solution to this problem. I tried to get in earlier when she referred to some parents who had used medical cannabis and found that some of it worked and some of it did not work. It sounds like an evidence base was being created there. I understand that she does not want to create a system for all our medical regulation based on observational trials, but there are many experts who say that randomised control trials will not work for cannabis and we need another way of getting the evidence. Given that we clearly have a system that is not working, is there not a case for this particular condition and this particular type of medicine being a special case? We need to find a different way of creating such an evidence base to give the clinicians comfort.
I will focus on the end bit. We do need to give clinicians comfort if they are going to prescribe medicines that help alleviate children’s pain. The challenge with the observational trial, as anyone who has been involved with medical trials will tell you, is that the smaller the cohort, very often the greater the problem is with the confidence intervals, and so on and so forth. There is a need to look at things by perhaps turning the telescope the other way up to see whether we can focus ourselves on approaching this in a different way to find solutions. However, the bottom line is that we need good evidence, because we have also been in this Chamber talking about drugs where the challenge to the patient has then transpired, and we later we have been here talking about the damage.
Particularly in the light of what my hon. Friend has just said about turning the telescope around and thinking about this in a different way, this is not just about the United Kingdom; this is global. There is evidence all over the world that we can use, and we do have a terrible tendency of “not invented here” in some of this. There are other countries in which the authorities are finding a positive way to license this medicine. While obviously the focus is on these particular children now, behind them sit tens of thousands of people self-medicating on cannabis and making themselves criminals in the process. Behind them sit our 2,500 veterans who have untreatable trauma, who are being driven into the hands of dealers to find ways of managing that trauma. We are turning heroes into junkies because we are not advancing the science base as fast as we should.
We should be really supporting the research, which is why I am delighted to hear what my hon. Friend has just said. Let us really go for this. We can underpin the bioscience base of our country if we do so. We have just seen Dr Carhart-Harris, a leading researcher in the whole application of psychedelics, disappear from doing research in London to the United States. It is exactly the parallel argument with medicine from cannabis. We need to get behind the scientists and the researchers, and let them help our people and teach our medical profession what is available to them to help their patients.
That is true. However, people have to come forward with clinical trials designed in a way that is acceptable and gives us robust outcomes. We have discussed this and Psilocybin, and many other things, at some length in the past, and although tonight is not the time to carry that on I am sure we will do so again.
We take into account literature and evidence from other countries, and the guidelines published by the National Institute for Health and Care Excellence were developed in accordance with well-established processes based on internationally recognised and accepted standards. This ensures a systematic, transparent approach in identifying the best available international evidence within the scope of guidance at the time of the NICE evidence review. However, NICE found that current research is limited and of low quality, and that makes it difficult to assess just how effective these medicines are, and we need to make sure they are safe.
I empathise with the Minister; this is tricky, because one does have to introduce medicines in a safe way according to a set formula and we have quite a good system.
I have two points. First, we were talking about prescribing to children untested or unvalidated medicines, yet in some treatments we are prescribing adult steroids to children. Will the Minister say something about that, as it seems slightly inconsistent? Secondly, there are patients, in particular children, who shortly will have no prescription whatsoever when the last specialist who can make these prescriptions retires. How are we going to cover that?
I am obviously very cognisant of the latter point, and my right hon. Friend the Member for Hemel Hempstead mentioned a court case. This adds to the need to find solutions to the problem. On adult steroids, that is a clinical decision by a doctor, and my hon. Friend would not expect me to comment on that, because we are dealing here with incredibly poorly children, and our heart goes out to them.
I thank the Minister for her generosity in giving way, and she is right that I want to make yet another observation.
One of the reasons why we all came into this House was to make change happen, and I know the Minister feels exactly the same. Maybe her hands are tied, but under the Health and Social Care Act 2012 the Secretary of State has the power to commission an investigation and research into new medicines. End our Pain has shown this to her officials several times; it has even been cited by a Queen’s counsel, whose opinion is that this is possible. This would be a great way to run an observational trial at no cost to parents; why will the Minister not take this option?
It is not in my gift to take that option, but I will take that comment back to the Health Secretary and have further discussions. As I said, in our very first meeting he highlighted this as an area where he wanted to see movement, and we are determined to get some movement.
We need the evidence base and we need trials to be ongoing to help inform future commissioning decisions. NHS England has also established a patient registry to collect uniform outcome data from licensed and unlicensed products. The refractory epilepsy specialist clinical advisory service has been established to provide expert impartial advice for clinicians treating complex cases while we await the outcome of clinical trials.
I hope I have managed to convey how committed I am, because I do believe that we ought to be able to find the solution for these children, and I was very aware of the hon. Lady’s point about what happens when they reach adulthood. My right hon. Friend the Member for Hemel Hempstead has spoken to me about the fact that as children move through and medicines gets better they thankfully survive longer, but then we have the added complexity of having to look at the system, which is why we want to make sure we find a solution. Finding the right solution is what we are after, because it will take time to generate further evidence and see the results of clinical trials. I do understand, however, that patients and families continue to access these medicines privately, and that the cost of doing so is very high. There are no easy or quick solutions, but I am committed that the Department will reconsider what action the Government may reasonably take with regard to access to unlicensed cannabis-based products for medicinal use where clinically appropriate.
The health of the children and adults dealing so courageously with these difficult-to-treat conditions is of paramount importance. I think it was Hannah who said to me that for every time Alfie does not end up in hospital having fitted repeatedly, there is a saving to the system.
My right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) made the point that the Government did supply the medication from a different Department, at no cost to the parents. I have suggested to the Minister that the Government, only on a temporary basis, should cover the cost for the very small number of children across the country who desperately need this medication, which they obtain through private prescription. Can she commit today from the Dispatch Box that she will at least try her best to find the money from her Department to cover those costs on a temporary basis?
I hope that I outlined earlier that a mixture of solutions is needed to crack this problem. We are not taking anything off the table. We are looking at every option that we can to ensure that we get the right support. Health is devolved, and the access to and funding of medicines is a matter for the relevant devolved nation. I hope, however, that hon. Members have seen that we are all trying to work on the challenge together, because there should not be a difference. As people have said this evening, this is not partisan; it is about making sure that we get the right care to the children.
I will commit that the health of children and adults is of paramount importance. It is of paramount importance to the Secretary of State and to me. I can assure hon. Members that I will carry on making sure, with my team, that we are doing as much as we can to try to get us to a solution that helps these children in the short term but also the long term, while having as the second strand of work the evidence base that we need to support the wider prescribing of any drug, because we need to make sure that we are doing it with care.
Question put and agreed to.