Medical Cannabis under Prescription: Children with Epilepsy

Before we begin, I remind Members that they are expected to wear face coverings, given the recent outbreak of covid-19 in Parliament. I expect all Members to be wearing masks if they are not speaking; if there are Members without a mask, masks can be found to my right, on top of the cupboard. This is in line with current Government guidance and that of the House of Commons Commission. I also remind Members that they are asked by the House to have a covid lateral flow test twice a week if coming on to the parliamentary estate. This can be done either at the testing centre in the House or at home. Please also give Members adequate space when seated and when entering and leaving the room.

Members will be aware that we have been delayed as a result of two votes, so this debate is due to end at 5.56 pm.

I beg to move,

That this House has considered medical cannabis under prescription for children with epilepsy.

It is a pleasure to serve under your chairmanship, Ms Bardell, and I am very grateful to open this debate on an issue that affects many of our constituents. I do not propose to speak for long, because I can see that quite a large number of colleagues are in the Chamber and would like to speak as well. If they have not already done so, I invite them to inform the Chair that they wish to speak.

I wish to mention my constituents Maya, who is nine years old, and Evelina, who is just four. Maya and Evelina suffer from rare forms of epilepsy and rely on medical cannabis to improve their quality of life. Their families are currently having to pay up to £2,000 a month for private prescriptions of medical cannabis, as they are unable to access that medicine on the NHS. Their families are also having to go to unbelievable lengths to raise money, something that has been made more difficult during the pandemic as there has been less opportunity to fundraise. Maya’s family have set up a Facebook page called “Mercy for Maya”, where her mum Samantha runs monthly fundraisers and raffles to help with the enormous monthly costs. My constituents should not have to do this for something that is legal on the NHS.

The picture that the hon. Member paints is one that I and many other hon. Members are familiar with, because we also have constituents going through the same ridiculous hoops to get a legally available medicine. Is he aware of any other medication in this country for which that has ever been the case—it has been legal and available, but people have had to raise the money for it themselves in this way?

I am not sure, but I doubt that our constituents would have to put their hands in their pockets to the tune of £2,000 a month to pay for any other medication that was extremely important for their severely ill children. My constituents, and indeed all Members’ constituents who have children in this situation, should not have to pay for this medication themselves.

Medical cannabis has had lots of benefits for Maya, including preventing her from having prolonged seizures, which has meant less time in hospital. Medical cannabis has also improved her alertness and engagement. She used to spend a lot of time asleep during the day, but she is now able to attend school, which she very much enjoys.

Both I and colleagues have lobbied the Government tirelessly to widen access to this life-changing and life-saving treatment. I am sure that I speak for many Members here today in expressing delight that medical cannabis was made legal in specialist cases in November 2018. This week marks three years since that law change.

I welcome the new Minister to her place and the good progress that the Government have made on widening access to medical cannabis. I am also grateful to her for agreeing to meet me, as co-chair of the all-party parliamentary group for access to medical cannabis under prescription, along with my colleague the hon. Member for Gower (Tonia Antoniazzi), later this month. I look forward to discussing the issues in greater detail with her.

You may be interested to learn, Ms Bardell, that since the very welcome law change three years ago, which should have improved the lives of children who suffer with rare and intractable forms of epilepsy, only three prescriptions have been issued on the NHS—only three prescriptions. At this point, I would like to clarify that we are talking about whole-plant extract. This type of medical cannabis, containing CBD and THC—cannabidiol and tetrahydrocannabinol—together with many other active ingredients, has been life transforming for a small cohort of families and their children. It is vital that that point is understood, as there have been several hundred prescriptions for a fully licensed paediatric drug known as Epidiolex, but that is primarily CBD-only. There is an acknowledgment that that drug has a role to play, but it was not the subject of the appeals that were so eloquently and passionately made by the families concerned when they visited Parliament at the start of this week.

The cost of having medicinal cannabis for children is astronomical, at between £800 and £2,000, and that is for those who can afford it. The very children who need the medicine to improve the quality of their lives where it has been proven to be effective and who cannot afford it cannot be put on the scrapheap to further delay. Does the hon. Gentleman agree?

I think it is imperative that we work cross party and we encourage, cajole and push the Government to do the right thing. The right thing is what? While acknowledging that the Ministers have these powers, I understand that there are concerns about whether such action might lead to unintended consequences in the form of legal challenge relating to other drugs. I am a lawyer; I understand that. I used to work in government and defend the Government from judicial review. I understand.

However, I believe that any such concerns and risks could be mitigated. I also suggest in the meantime that the Government use the discretionary fund that they have at their disposal to cover the cost of the private prescriptions. There are a small number of children and families across the country in this desperate financial situation. The Government can intervene financially to reduce the burden every month, so that families such as those of my constituents Maya and Evelina do not have to rely on the uncertainty of fundraising. That is my favoured option, and I urge my hon. Friend the Minister to access that fund.

During the pandemic, Maya had to be rushed to A&E a few times due to her condition. Surely these children needing to go to hospital to have urgent medical treatment is more costly to the NHS than providing them with the prescription they need. Therefore, I suggest, only as an interim measure—I plead—that the Government consider covering the costs of the private prescriptions for the most vulnerable children in our country suffering from severe epilepsy who need this medication, until the Government find a solution with the bodies and particularly the medical profession.

In conclusion, I urge my colleagues in Government to consider the recommendations that I and other colleagues across the House have made and are making here today, as well as listening to the families affected. While I appreciate the good work that the Government have done on this issue, they can and should go further. I and many colleagues across the House will continue to champion better access to medicinal cannabis on the NHS for my constituents, all the constituents affected across our country and all the children suffering from this awful illness, so that they get the drugs necessary, free at the point of need on the NHS.

Before I call speakers, I want to acknowledge those who are with us in the Chamber today and those who are watching. I also acknowledge the importance of this subject. Because it is such an important subject and I want to call the Front Bench by 5.34 pm, with the Labour and Scottish National party spokespersons having five minutes each, I will impose an initial time limit of four minutes to ensure that every Member has the opportunity to represent this very important issue.

It is a pleasure to see you in the Chair this afternoon, Ms Bardell. I pay tribute to the hon. Member for South Leicestershire (Alberto Costa) for securing this debate, for his articulate and forensic analysis, and for the coherent account we have heard from him.

It is three years since we were able to celebrate the change in the law that should have helped the children and families we have been hearing from this week. Sadly, after three long years, they are no further forward. As we have heard, since 2018, only three NHS prescriptions have been issued for the type of medical cannabis that was shown to be so life-transforming for the likes of the then six-year-old Alfie Dingley, whom the hon. Member spoke of earlier. It was Alfie and his mum who were at the forefront of this campaign. They and many others achieved the change in the law that they had all worked so hard for.

Heartbreakingly, while the law has changed, it has not been properly implemented and utilised for those crying out for help. Families have been left at breaking point emotionally and financially, having to find up to £2,000 a month to pay privately for this medicine. I cannot begin to imagine how on earth these loving parents cope with such massive monthly costs— £2,000 a month is the equivalent of an additional and very substantial mortgage. In fact, it would dwarf many people’s mortgage payments. Not even we MPs on over £80,000 a year could cope with that. How on earth can we expect those families to withstand such huge costs, simply trying to keep their children alive and free from the ravages of seizures by accessing a known and proven prescriptive solution?

That these families cannot secure NHS prescriptions for their children, when it has been proved beyond any doubt that cannabis is efficacious, is a monumental shame. The campaign group that the hon. Member mentioned, End Our Pain, rightly said that this saga has dragged on for far too long. Those families have petitioned, marched and campaigned with such dignity. They should not and must not be ignored.

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. It was the most coherent speech on the subject I have heard in a long time.

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 not about reforming drug law in this country. 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.

It is an honour to serve under your chairship, Ms Bardell. I thank the hon. Member for South Leicestershire (Alberto Costa) for securing this incredibly important debate and for his extremely powerful contribution. I am also grateful for the other contributions that we have heard, especially that of my great friend, the hon. Member for Middlesbrough (Andy McDonald).

I pay tribute to those of my Liverpool, West Derby constituents who are living through the devastating consequences caused by the lack of access to medicinal cannabis. I pay tribute to the families, their friends and all those in our community who have campaigned relentlessley for those people. They should not have to fight that hard and they should not have to endure so much. It was a real privilege to meet some of the campaigners at the End Our Pain event. One of my constituents wanted to be there, but it is extremely difficult for her to be away from her child at the moment—their time together is so precious.

I was proud to sign End Our Pain’s letter to the Prime Minister and Secretary of State yesterday, which asked for immediate action to find a way to help the families with children with severe epilepsy, who continue to be denied NHS access to medical cannabis, as we have heard so powerfully so far. I know that the Minister was listening intently, and I can see the empathy in her eyes. I urge her, on behalf of my constituents, to take immediate steps and do whatever it takes to help these families. I ask that the Minister intervene to help adults who require access to medical cannabis under NHS prescriptions. I spoke to some families yesterday. There are siblings going through the same unimaginable pain. I am happy to discuss this at any time with the Minister.

The law was changed on 1 November 2018 to allow access to medical cannabis under prescription. This brought hope to many families. In my first meeting after becoming an MP in 2019, I spoke to families and they had an air of optimism. They thought there was change coming, but the reality three years on, as so eloquently put by the hon. Member for South Leicestershire, is that only three NHS prescriptions have been written for whole-extract cannabis oil. Families are having to raise £2,000 a month to buy this medicine privately.

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 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.

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?