Medical Cannabis under Prescription: Children with Epilepsy

Mike Penning Excerpts

Wednesday 3rd November 2021 Westminster Hall

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

May I say what a moving speech that was by the hon. Member for Middlesbrough (Andy McDonald)? That sort of personal experience is exactly what this issue is all about.

I came into politics to help. To my knowledge, I do not have a single constituent who benefits from a prescription for medical cannabis, but that does not make it any less important that I campaign on behalf of the all-party parliamentary group. I could not disagree with a single word in the speech by my hon. Friend the Member for South Leicestershire (Alberto Costa), who succeeded me as co-chair when I stepped down.

In 2015, as the Home Office Minister responsible for drug policy in Government, and sat where the Minister is sitting now, I made a speech saying that the Government were minded to allow the prescribed medical use of cannabis. I did not say that for the sake of it; I said it because the then Home Secretary, my right hon. Friend the Member for Maidenhead (Mrs May), gave me permission to do so. She went on to be Prime Minister, and one of the reasons why Alfie got his medication, and why the Caldwell family’s campaign was so successful in the Province, was that she picked the issue up and said, “We are going to do something about this.” In 2018, the then Home Secretary was able to change the law for that reason.

I say to all colleagues, and to anybody listening to the debate, that this issue is not about rolling a cannabis joint. It is about a group of children, some of whom have clicked over into adulthood now, who may well not have been here today were it not for some very brave consultants turning their backs on what the profession was telling them to do, and doing instead what was right for those children. Those consultants have come under enormous pressure not to sign the prescriptions.

When we drafted the legislation, we were very careful to ensure that it was not up to GPs alone to issue the prescriptions. We did not want to get into another opioid situation—I will not say that opioids are prescribed willy-nilly, because that would be unfair, but we know there is an opioid epidemic. We specifically said that the GP had to refer the child to a specialist, and that it would be for the specialist to decide. A few have been brave enough to do so.

Sadly, as my hon. Friend the Member for South Leicestershire mentioned, and as the parents were telling us only yesterday when they were here lobbying colleagues, some of those consultants are retiring, and of those who want to prescribe medical cannabis, some are too frightened that they will be referred to the professional body. If they do prescribe it, their employers are refusing to honour the prescription. I thought we had an NHS that was free at the point of delivery when an NHS prescription is issued.

I have no notes—I have no need for them. I have discussed this issue so many times in this Chamber, as well as in the main Chamber, where I will be tomorrow. Politicians get it; Secretaries of State get it; the Minister gets it. But parts of the medical profession do not get that they are responsible for keeping these young children alive, and that they need to get off their butts and do so.

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[Patrick Grady (Glasgow North) (SNP)]

It is a pleasure, once again, to serve under your chairmanship this afternoon, Ms Bardell. I would not often say that I agree with every word said by a Conservative Member, but in the case of the hon. Member for South Leicestershire (Alberto Costa), it is accurate. He gave an incredibly considered speech. It is great to hear the consensus that exists in this room.

We have today’s debate, my hon. Friend the Member for Inverclyde (Ronnie Cowan) has a more general debate tomorrow on the medical use of cannabis, rather than in cases of epilepsy, and the hon. Member for Manchester, Withington (Jeff Smith) has introduced a private Member’s Bill on the issue. That shows the cross-party consensus, the momentum and the urgency of the issue. Everyone today is speaking about their constituents’ experiences. I pay tribute to all the families and campaigners who have come forward and are prepared to speak out. I met with some yesterday at the End Our Pain lobby. Plenty of my own constituents have lobbied on the issue, because they have been moved by the stories they have heard, and I have a particular case.

The name of the campaign, End Our Pain, says so much. It is the pain that the individual children, and the adults, are experiencing with their medical conditions. It is the psychological pain the families are going through as well, having to watch the physical pain that their children are suffering. All that pain can be, at the very least, mitigated, if some of the steps that we have heard about are properly taken.

I have spoken previously about my constituents John and Laura and their beautiful daughter Bláthnaid, who is affected by Aicadri syndrome, which is a very severe and rare form of epilepsy. There are only several thousand cases worldwide. It is very difficult for clinicians to know what might or might not work. It is incredibly distressing for both the parents and the children, who do not understand what is happening when they go through these seizures. Many of the conventional medicines that are tried have their own side effects that cause particular difficulties, or resistance builds up, which increases a different kind of suffering.

[Sir Mike Penning]

Is the hon. Gentleman aware that doctors are prescribing off-label drugs that work for adults, particularly steroids, to these children, but they are not willing to look at medical cannabis?

[Patrick Grady]

Yes, and a few years ago we had the Off-patent Drugs Bill, which sadly did not make as much progress as it could have done. That had the potential to give doctors more freedom, which is clearly one of the messages coming out of the debate. Of course there will be an element of risk, but there has to be a way of managing and mitigating it so that doctors can feel more confident about prescribing cannabis-derived treatments.

When my constituents see the positive effects that CBD can have, they wonder what effects a drug with THC might have. When they see the benefits to other children, even though every case and condition is unique, the potential must exist there, and when the alternative is to go private and pay incredible amounts of money, which is not without its own risk, the frustration becomes very real, so the Government have to speed up the trials and the opportunity for people to take part in them. They have to look at how the licensing can improve and how we can increase the confidence of doctors. Above all, they have to listen to the voices of parents and patients, and their carers and advocates in Parliament.

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[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I would like to start by congratulating my hon. Friend the Member for South Leicestershire (Alberto Costa) on securing the debate. He lobbies on this issue almost daily, representing constituents such as Maya and Evelina so well. I fully appreciate the strength of feeling and the impact that this issue has on some of the most vulnerable children in their daily struggle with drug-resistant epilepsy. That is why, three years ago, my right hon. Friend the Secretary of State for Health and Social Care, who was then Home Secretary, changed the law to recognise the need to allow unlicensed cannabis-based products to be prescribed by specialist doctors. The Government are supportive and have used many levers, which has been quite challenging at times.

My right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) hit the nail on the head when he said that this is now more a clinical issue than a political one. In many cases, doctors are unwilling to prescribe medicinal cannabis; we heard from a number of Members that we may be down to just one clinician left who is willing to do that. The main reason is that these products are still unlicensed. The way that medicine works in this country is that the Medicines and Healthcare Products Regulatory Agency will license a product after significant research, not just into the efficacy—we have heard from many Members that there is a strong feeling that these medicines work—but into the adverse events and potential side effects. In prescribing these medications, the clinicians will take responsibility both for the drugs working and for any impact of those drugs.

[Sir Mike Penning]

This is the argument that always comes up in the briefings for Ministers. If it is not safe, how are prescriptions being given for free on the NHS? If it is safe, give it to the rest of them. It cannot be right that time and again Ministers use the argument about safety, when prescriptions are given free on the NHS.

[Maria Caulfield]

These are clinical decisions. No one is saying that these products are not safe, but there is not the evidence base to get the licence. The MHRA does this for every single medicine, not just medicinal cannabis.

I want to set out how we can get to a place where we can get these drugs licensed and clinicians will feel confident in prescribing them. We recognise that, for many children, these drugs improve their quality of life—individuals have reported improvements—but without that research evidence base, the MHRA will not give a licence. The MHRA is an independent body—it is not controlled by the Government—and the clinicians will take advice and guidance from it. We may agree or disagree with how the MHRA licenses a medicine, but that is the process for all drugs. It is not just the MHRA—no country in the world has licensed this product. The Food and Drug Administration has not; the European Medicines Agency has not; the MHRA has not. The solution is in pushing the clinical research needed for a licence to be granted, which would open up prescribing for clinicians around the country.