Medical Cannabis (Access) Bill

Debate between Jeff Smith and Patrick Grady

Friday 10th December 2021 Commons Chamber

[Jeff Smith]

My hon. Friend makes a really important point. It is about not just medicines and health, but a life sciences opportunity that we ought to take up. The problem is that, if people cannot get the product, which, as he says, is well manufactured and safe, easily on prescription, the risk is that they will go to the illicit market and get products that perhaps should not be trusted as much as a prescribed product.

Earlier this week, I spoke to a mother who has a daughter with treatment-resistant epilepsy and she pays £2,000 a month for her daughter’s medicine on a private prescription. One of my constituents pays nearly £700 a month for his grandson’s medicine. Epilepsy prescriptions can cost £1,000 to £1,500 a month—that is not unusual. Families of patients in the most urgent need often have to resort to support from crowdfunding or individual donors to keep their medicine going. It is just not right that patients have to resort to that for a prescribed medicine because they cannot get it on the NHS. As I mentioned, many others are forced to get their medicine through illicit means.

Much of the campaigning on this issue is still focused on children with treatment-resistant epilepsy; they have been the highest-profile cohort of patients and I suspect many of the contributions to the debate will focus on that cohort. However, I want to emphasise that they are not the only patients who would benefit from access to cannabis-based medicines. They are probably the cohort most acutely affected. For many of them, it is an urgent and high-stakes issue—sometimes, it can be literally the difference between life and death—so it is right that we focus some of our discussion on them. I will offer a couple of examples to illustrate the importance and the power of this medicine to that group and others. Those in that cohort are not the only ones who can benefit.

In 2018, the then chief medical officer, Dame Sally Davies, said that there is

“conclusive evidence of the therapeutic benefit of cannabis based medicinal products for certain medical conditions”.

That is why she recommended that they should be moved out of schedule 1.

[Patrick Grady (Glasgow North) (SNP)]

I congratulate the hon. Gentleman on bringing forward the Bill. Although it applies to England only, many of us would like to see access to medical cannabis more widely across the whole UK, especially when we have heard testimonies from constituents and their children who would benefit. As the campaign continues, does he agree that the devolved Administrations and the Westminster Government should work together on this wherever possible and, if appropriate, ensure that powers are devolved so that the devolved assemblies are able to go further and faster if they want to?

[Jeff Smith]

The hon. Gentleman makes a really important point, and I agree. I do not agree with everything that the devolved Administration in Scotland do, but they do have an approach to these sorts of issues that is more focused on harm reduction and evidence than perhaps we have in England.

Cannabis-based medicines are already approved as a treatment for a small number of medical conditions. Currently, the National Institute for Health and Care Excellence guidelines recommend four licensed cannabis-based medical products that can be prescribed in the UK. I will talk about the terminology in a moment, but there are two THC-based medicines—dronabinol, which is licensed for appetite loss in AIDS patients and as an antiemetic in chemotherapy, and nabilone, which is a synthetic cannabinoid medicine licensed for nausea in individuals receiving chemotherapy. There is also Sativex, a combined THC and CBD medicine, which is licensed for muscle spasticity in multiple sclerosis patients, and Epidiolex, a CBD-based medicine—it is 99.8% CBD with less than 0.1% THC—for the two rare childhood epilepsies, Lennox-Gastaut syndrome and Dravet syndrome.

I am referring to THC and CBD; it might be helpful if I say a few words about terminology, and about the nature of cannabis, ahead of my next remarks about the proposals in the Bill. The cannabis plant is made up of something like 147 cannabinoids. They are the compounds that act on the cannabinoid system in the human body. There are also over 100 terpenes, which are aromatic compounds; flavonoids, which are pigments; and four other minor sets of compounds, so it is quite a complex botanical plant.

The complexity of the plant and its compounds is part of the issue that I will try to explain shortly, but the two main types of compounds that I am referring to are tetrahydrocannabinol, or THC, which is the psychoactive ingredient—very broadly and slightly simplistically, that is the ingredient that produces the high that recreational users experience, but it is also a painkiller—and cannabidiol, or CBD. Broadly, CBD has a more sedative effect—a kind of chill-out effect.

CBD on its own is legal in many countries, including this one; it is the THC content that makes cannabis illegal for recreational use in many countries. Different strains of cannabis plant have different balances of THC and CBD, and cannabis medicines do too. For example, Epidiolex, which is one of the most used medicines for severe epilepsy, is overwhelmingly CBD and has a very small amount of THC. Sativex has a higher proportion of THC. That is important because different treatments and balances work for different patients, and sometimes people have to adjust and tweak their treatment to find out what is right for them. If I refer to full-spectrum cannabis extract, that is a cannabis compound concentrate that preserves the full cannabinoid and terpene contents of the raw cannabis plant, including CBD, THC and other compounds. That is the plant, which is the basis of the medicine.

I want to provide three case studies of the real-life effect of cannabis-based medicines. Probably the most famous case is Alfie Dingley and his mum Hannah Deacon, whose campaign for access to medical cannabis helped to change the law in 2018. Alfie was perfectly healthy until he was four months old, when he became constantly sick and began having seizures. The seizures continued for months and he lost every skill he had developed. He was diagnosed with auto-immune epilepsy. The amount of time between Alfie’s clusters of seizures shortened as he got older. By the time he was five, they were happening every week. Each time, he needed up to five doses of intravenous steroids, which had a really negative effect on his personality and behaviour. Eventually, Alfie was diagnosed with a rare epilepsy syndrome which affects only nine known boys worldwide. There are slightly more girls with the syndrome, but only nine known boys in the world.

Hannah, Alfie’s mum, was desperate for a solution. She researched anything that might help and came across medical cannabis, so she learnt about the human cannabinoid system and cannabis medicines. At the time, Alfie’s doctors were telling her that regular steroids would eventually kill him, so to Hannah, cannabis medicines seemed like his only chance. She began the campaign for Alfie to have a prescription of cannabis medicines in the UK, where they were illegal at the time.

Once the family had raised enough money, they moved, in September 2017, to the Netherlands, where they could get medical cannabis legally. There they gave Alfie an oil prepared from Bedrolite, which is made by the Dutch company Bedrocan. That is a standardised strain of cannabis plant, with full extract CBD oil. Over the next three months, Alfie’s seizures became less frequent. They added THC oil called Bedica, also made by Bedrocan, under the guidance of their paediatric neurologist. Alfie went without seizures for 40 days. When he did have the clusters, they were less intense and were controlled much more easily. His cognitive development improved greatly.

Living abroad, however, was really hard for the family. After five months they ran out of money, so they had to come back home to the UK. In the UK, they had to fight for a prescription that contained both CBD and THC. Eventually, as a result of the campaign led by Hannah and other families, and under immense pressure from those desperate families, the Government agreed to change the law to make medical cannabis legal. Alfie finally received an NHS prescription for the products he had found so beneficial in the Netherlands in November 2018. It is still one of only three prescriptions in the UK, and his family had to go through an unusual process and special approvals to get that medicine.

Three years later, Hannah has recently reported that Alfie has not had a seizure in over 500 days. Before his medical cannabis treatment, he was having 150 fits a week. Although cannabis medicines are not a silver bullet for everyone, they have been absolutely life-transforming for Alfie, Hannah and the rest of the family. Alfie’s is a particularly unusual syndrome, but the majority of children in similar situations have not been able to get access to medicines despite their now being legal.

Private Members’ Bills

Debate between Jeff Smith and Patrick Grady

Wednesday 13th April 2016 Westminster Hall

[Jeff Smith]

The hon. Gentleman has identified an important point, and I will come to sitting Fridays shortly. In some cases I have had hundreds of emails from constituents urging me to turn up on a Friday for a private Member’s Bill—sometimes because charities or other organisations have mobilised them—and we are doing a disservice to those organisations and constituents, and to ourselves, by allowing expectations to be raised that a debate in Parliament will lead to a Bill being passed.

[Patrick Grady (Glasgow North) (SNP)]

Expectation management is important, both for charities, in managing the expectations of those who are emailing us, and for us, in the way that we respond. Does the hon. Gentleman agree that to a certain extent that extends to the ten-minute rule Bill procedure? I had emails from constituents who wanted me to vote on a Representation of the People ten-minute rule Bill because they genuinely thought there would be a debate in this place that would change the voting system of the United Kingdom, but that was not going to happen. I do not think that is necessarily the constituents’ fault. The charities have to take a bit of responsibility for managing the expectations of the people they ask to write to us.

[Jeff Smith]

I agree with that important point. Sometimes it is difficult to know whether it is due to lack of knowledge or wilful misreading of parliamentary procedure. I like to think it is the former, but that indicates that we need to be much more open and clear about not just private Members’ Bills but a whole range of other parliamentary procedures, as the hon. Gentleman rightly indicated.