Medicinal Cannabis
Debate between Mike Penning and Tonia Antoniazzi(3 years, 3 months ago)
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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.”
The National Health Service
Debate between Mike Penning and Tonia Antoniazzi(5 years, 2 months ago)
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Tonia Antoniazzi
I thank my hon. Friend; I look forward to keeping on working with him.
It has been an uphill struggle. While thousands of people across the world have access to medicinal cannabis, the law was preventing patients in the UK from accessing it.
We have worked with the amazing families of the End Our Pain campaign, spearheaded by the amazing Hannah Deacon, who is mum to Alfie Dingley. Hannah’s campaigning meant that she got a special licence for Alfie to continue to use the cannabis that had transformed his life in the Netherlands. Then Sophia Gibson and Billy Caldwell were given prescriptions for medical cannabis. The highlight came last year, on 1 November, when there was a change in the law to reclassify cannabis so that it was available for medical use.
At the time, we thought that would mean that the children who were suffering would be able to have cannabis prescribed by specialist consultants. It turned out that that was not the case, so many other children were not given access to this life-changing medicine. Children from all over the UK continue to suffer because the Government are dragging their feet. The medicine is proven to work for many types of sufferers, but children are still being pumped full of steroids and unlicensed drugs that leave them severely impaired. The effect on the families has been terrible—on the children, the siblings and the parents. It is just not fair.
No one claims that this is a miracle drug. It is not a cure for epilepsy, but it does make a huge difference to the quality of children’s lives. Everyone has a right to live their best life.
I have worked closely with the parents of Bailey Williams from Cardiff, Rachel and Craig. I have seen at first hand the difference that this medicine has made to their son. When I called at their house one evening, Bailey got out of the chair, picked up a bunch of flowers and brought them to me. I actually cried to see a child who previously could not get out of bed get up out of a chair and give me a gift of thanks.
A lot of other children have the same story. Alfie has been riding a bike and a horse—something that would never have happened when he was on his previous drugs. The problem is that Alfie is getting to a point where the efficacy of this type of medicinal cannabis is dulling. As with all long-term medication, he needs a review and to be put on a new strain. However, the strict restrictions mean that even Alfie will not be able to access a new strain. As his tolerance to his medication builds, he is beginning to have more seizures. What next for Alfie? What will the Secretary of State do?
As we approach the anniversary of the law change, I want to reflect on what has happened to the lives of the families I have worked with, as co-chair of the all-party group on medical cannabis under prescription along with the right hon. Member for Hemel Hempstead (Sir Mike Penning). At the End Our Pain campaign event on 19 March, the Secretary of State told the families that he would make sure they got the medicine they needed. However, more than six months on from that promise and nearly a year on from the law change, not one new NHS prescription has been made, not one child has benefited from medical cannabis, and not one family have been able to move on with their lives.
Sir Mike Penning
This issue shows the House how people from different parties, with very diverse views on politics, can work together for the good of children. There are children who are getting medical cannabis on prescription, but their parents or grandparents are paying for it. The NHS is free at the point of delivery. Surely that is how it should be.
Tonia Antoniazzi
I absolutely agree with the right hon. Gentleman.
I made a personal choice to go to the Netherlands with some of the parents to pick up the cannabis they need for their children—parents such as Emma Appleby who has a prescription for her daughter, Teagan, that costs thousands of pounds. She can afford to fly to the Netherlands to get the prescription because it costs less over there. The Government have created a two-tier system. Parents are forced to fundraise for medicines. One mother has put her house up for sale to pay for the next round of drugs. These families have run out of time, run out of money and run out of patience. All 20 families will go on hunger strike because they are at the end of the line.
I will move on swiftly. On 19 September, six months after the Secretary of State had made his promises, the families were continuing to fight for their kids. They took a bill to the Secretary of State showing the money they had spent on their private prescriptions, and they have delivered letters to the Prime Minister begging him to do something, but they have been ignored. They have not had a response, and that is absolutely disgraceful.
These families are being pushed to the end of their tether, and I honestly believe that it is time for the Secretary of State either to consider his position or to get this sorted. As a mother, if I was faced with this inaction, I would be fighting and fighting to get these life-saving drugs from the NHS—for free. I would be doing everything I could, and that is why I will continue to do everything I can to help these children who are needlessly suffering. I will raise this at every opportunity, and I will not stop until we have the good news that we need.
Medical Cannabis under Prescription
Debate between Mike Penning and Tonia Antoniazzi(5 years, 7 months ago)
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Tonia Antoniazzi
I completely agree. The families of children with intractable epilepsy are in exactly the same position, as are so many other people throughout the United Kingdom. My friend Chris is a very good example of how wrong it is that people with MS or epilepsy have no access to whole plant medical cannabis. As we know, it will never be a cure for everyone, but, as Chris told me yesterday, it provides the chance of a better quality of life. That is what people want. It is what the parents of children with intractable epilepsy want. They are at the end of the road. They have tried everything from the ketogenic diet to unlicensed drugs, which make the children unreceptive and do not improve their quality of life.
Sir Mike Penning
I pay tribute to my co-chair of the all-party parliamentary group: without her support, we would not be here today. I feel for her constituent as well as mine. They are asking us to help, and we are doing everything we possibly can, but we are not medics and we cannot prescribe. Doctors seem happy to sign off and prescribe off-label drugs for purposes that have absolutely nothing to do with what those drugs were licensed for, but they are not willing to license medical cannabis. Does the hon. Lady not agree that that is an imbalance?
Tonia Antoniazzi
I do agree. It just does not make sense, which is infuriating, because I like to apply sense and logic to most situations, and the current situation is not logical.
Not being able to access medical cannabis leads people such as Chris and the parents of children with epilepsy to consider alternative ways of accessing cannabis, which—as has already been pointed out—is fuelling a dangerous online trade in which, for all we know, they could be buying anything. That is dangerous and wrong. Clinicians to whom I have spoken often ask parents what they have given their children in addition to over-the-counter drugs. Access to CBD alone has great health benefits that are not recognised by many in the medical profession. The right hon. Member for Hemel Hempstead has referred to its being described as homeopathy. When I say that one of my interests lies in medical cannabis, there will always be someone—even a politician—who will make the pun about wacky baccy, and it is really not appropriate. ‘
There seems to be a theoretical concern about the exposure of children to THC, but that is about recreational use; it is not about medical cannabis. Discussions about the legalisation of cannabis for recreational use and about the rescheduling of cannabis for medical use under prescription must not be conflated in the House. Let me put the position into perspective. The law changed because of one boy, Alfie Dingley, and the campaign spearheaded by his mum, the fantastic Hannah Deacon, who is in the Visitors’ Gallery today.