Medicinal Cannabis

Christine Jardine Excerpts

Monday 6th September 2021 Commons Chamber

[Christine Jardine (Edinburgh West) (LD)]

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.

[Sir Mike Penning (Hemel Hempstead) (Con)]

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.

[Christine Jardine]

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.

[Alberto Costa (South Leicestershire) (Con)]

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?

[Christine Jardine]

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 (Windsor) (Con)]

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]

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.

[Alberto Costa]

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?

[Christine Jardine]

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.

[Sir Mike Penning]

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.

[Christine Jardine]

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.

[Tonia Antoniazzi (Gower) (Lab)]

The Secretary of State for Health and Social Care is the best-placed person to move the debate forward, because he was the one in government in the Home Office who changed the law. Does the hon. Member agree that we need action now?

[Christine Jardine]

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.

[Sir Mike Penning]

And the DUP.

[Christine Jardine]

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.

[Several hon. Members rose—]

--- Later in debate ---

[Tonia Antoniazzi]

rose—

[Christine Jardine]

rose—

[Dr Cameron]

rose—

--- Later in debate ---

[Jo Churchill]

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.

[Christine Jardine]

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.

[Jo Churchill]

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.

--- Later in debate ---

[Jo Churchill]

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.

[Christine Jardine]

On that point, will the Minister give way?

[Jo Churchill]

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.

[Christine Jardine]

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.

[Jo Churchill]

I apologise for the confusion; I misheard.