Monday 6th September 2021

(2 years, 7 months ago)

Commons Chamber
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Christine Jardine Portrait Christine Jardine
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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.

Adam Afriyie Portrait Adam Afriyie (Windsor) (Con)
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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.

Christine Jardine Portrait Christine Jardine
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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.

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Mike Penning Portrait Sir Mike Penning (Hemel Hempstead) (Con)
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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.

Adam Afriyie Portrait Adam Afriyie
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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?

Mike Penning Portrait Sir Mike Penning
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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.

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Crispin Blunt Portrait Crispin Blunt
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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.

Adam Afriyie Portrait Adam Afriyie
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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.

Crispin Blunt Portrait Crispin Blunt
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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.

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Crispin Blunt Portrait Crispin Blunt
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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.

Adam Afriyie Portrait Adam Afriyie
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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.

Crispin Blunt Portrait Crispin Blunt
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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.

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Jo Churchill Portrait Jo Churchill
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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.

Adam Afriyie Portrait Adam Afriyie
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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?

Jo Churchill Portrait Jo Churchill
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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.