Sir Mike Penning asks how it is that, despite the law having been changed, the medical profession can still prevent children who have the very rare form of epilepsy resulting in hundreds of seizures a day from obtaining medicinal cannabis on prescription.
Sir Mike Penning (Hemel Hempstead) (Con)
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
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?
Sir Mike Penning
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.
Ronnie Cowan (Inverclyde) (SNP)
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”.
Sir Mike Penning
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.
Tonia Antoniazzi
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?
Sir Mike Penning
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.
Tonia Antoniazzi
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?
Sir Mike Penning
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.”
Alberto Costa
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?
Sir Mike Penning
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.