Medical Cannabis under Prescription

James Cartlidge Excerpts
Monday 20th May 2019

(4 years, 11 months ago)

Commons Chamber
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James Cartlidge Portrait James Cartlidge (South Suffolk) (Con)
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It is a pleasure to follow the hon. Member for Glasgow North (Patrick Grady), who made a very good speech. It is always a pleasure to see someone fighting hard for their constituents, as we all are. He is right that all Members are mentioning similar cases, and I will also be doing so, but I first want to pay tribute to my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Gower (Tonia Antoniazzi) for the great passion and tenacity with which they have campaigned on the behalf of those who are suffering such pain. Sufferers are looking for a way to reduce their pain, and they believe that they have found one. That is the key challenge for us.

My case concerns a four-year-old girl called Indie-Rose. Her parents Anthony Clarry and Tannine Montgomery live in Clare in my constituency. Indie-Rose has Dravet syndrome and, as we have heard in other cases, suffers from frequent terrible seizures as a result of her epilepsy. Her parents have found that cannabis-based medicine reduces those seizures dramatically—they estimate by around 75%—but it comes at a huge cost, because my constituents have had to crowdsource thousands of pounds to go over to Holland, pay for the medicine and bring it back. I strongly feel that we must examine this issue because, as others have said, that situation cannot be sustainable, especially in a country that has a free healthcare system that is designed to help not just those in need but the most vulnerable in particular.

The compound that Indie-Rose’s parents have been purchasing is artisanal and unlicensed. It is a mixture of Bedrolite and Bedica, which of course contain THC, and the single greatest issue for me is that while there is evidence about the impact of CBD, there is little evidence about THC. When I first became involved in the case, I felt that I had a duty to understand it more and to appreciate why there was resistance in what we might loosely call the medical establishment to prescribing a THC-based solution, such as that which was already being given to Indie-Rose and which was successfully, in her parents’ opinion, reducing her pain and suffering. I organised a meeting to discuss the situation in April at Addenbrooke’s hospital with some of the most senior clinicians that one could hope to have in a room, all of whom were familiar with Indie-Rose’s case. We are lucky to have hon. Members in this House with serious medical experience, but most of us are not clinicians, and none of us is the clinician in the cases that we are talking about. We are politicians, so I wanted to understand better the barriers to the NHS prescription that my constituents were seeking.

At times in this debate, the situation has been spoken of as if the argument is about whether cannabis-based medicine should be prescribed at all, but it is clearly about the type of medicines that should be prescribed. There is clearly nervousness in the medical establishment about THC. We should not hide from that point, and there is perhaps a very good reason for that point of view.

Alberto Costa Portrait Alberto Costa (South Leicestershire) (Con)
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Does my hon. Friend agree that the points he is making are further evidence for why the conclusions of the interim report of the NHS’s review of the situation, as requested by the Secretary of State, should be published as soon as possible? The report will help us to identify answers to my hon. Friend’s points, and it may help my constituents Evelina Lukoševičius, who is two years old, and Maya Fairlie, who is seven years old, to access this life-saving medicine—if, indeed, that is what the review concludes.

James Cartlidge Portrait James Cartlidge
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My hon. Friend makes a good point. I would just be cautious about using the term “life-saving”, because this is about easing pain. These medicines are not cures; they relieve the pain of seizures. However, I understand my hon. Friend’s point, as we all did.

The meeting that I organised was instructive for me in many ways. Since then, I have obviously continued to correspond with my constituents to try to explain to them the powers that I have in this case and the next steps that they need to take. When this debate came up, they emailed to ask me to put one question to the Minister. Remember, they are not being prescribed THC-based compounds; they have been offered Epidiolex, which is a CBD-based medicine. They want me to ask whether any other children with epilepsy, or any other condition—of course, it is primarily complex epilepsy—have been prescribed THC-based medicines.

That information is in the public domain in the form of a written answer. As I understand it, 110 items—items, not people—of CBD-based medicine have been prescribed, along with 16 items of THC-based compounds, six of them on the NHS. That is an important point, as my constituents want to know whether others have been granted such medicines, and clearly they have. Where is the consistency? That is the confusion. Of course we cannot know the unique personal medical facts of each case, which must always be down to the clinicians, but we now know that THC-based solutions have been prescribed.

Mike Penning Portrait Sir Mike Penning
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It is fantastic that we have the time to talk these things through. We do not have one NHS because, as my hon. Friend says, some people have been prescribed this. My constituent has been completely refused CBD, and the letter came back saying, “No, Mr Penning, we don’t give homeopathic therapies.”

The fear for those who use CBD is whether the European Commission will consider banning not the prescription but the public purchase of CBD. Apparently the Commission sees it as a novelty food, which we need to discuss because a lot of our constituents use non-THC products, which are perfectly legal, to ease their pain. My constituent has just texted me to say thank you because the medical company has given her some more oil, which the CCG has refused and thus her GP cannot write a prescription.

James Cartlidge Portrait James Cartlidge
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I am sure my right hon. Friend’s constituent is very pleased by that intervention. He underlines the key challenge, which is that these medicines are what is known as “artisanal”. They are unlicensed, and they are not standardised pharmaceutical medicines, which can be a problem for doctors who want to know their standard chemical make-up. Doctors feel they cannot entirely rely on these medicines. The nub of it is to what extent we in this place should be pressing those who have to make clinical decisions.

My hon. Friend the Member for Henley (John Howell) said that this has to be a clinical decision, and my hon. Friend the Member for Reigate (Crispin Blunt) made the brilliant point that, if not for us, we would not be in this position and what has been prescribed so far would not have been prescribed. Let us be honest about it: this has been the result of campaigning, which is why I congratulate all those who have campaigned.

Nevertheless, this ultimately has to be clinically based. We cannot have political prescribing. It may be that applying maximum pressure has resulted in some prescription decisions. I hope that is not the case but, in reality, it may have been. We must have a consistent, transparent system that we have faith in and that leads to clinical decisions delivering the best outcomes for our constituents.

Mike Penning Portrait Sir Mike Penning
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That is exactly why NHS England is reviewing the blockages in the signing of prescriptions. The Minister can confirm this, but I understand that the interim report will come out by the end of this month, and I believe the full report will go to the Secretary of State by mid-June, which is very quick for the NHS.

There has to be a level playing field. It is not for us to tell the doctors but, if a suitably qualified doctor is prescribing it, what is the blockage for my hon. Friend’s constituent and for the rest of them?

James Cartlidge Portrait James Cartlidge
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That is what I have been trying to understand. If I were to hazard a guess, I think there has been institutional resistance to CBD in general, but particularly to THC. In a sense, we have helped to force an open-mindedness towards it. When people say there is no evidence, what they mean is that there is no evidence from standard clinical tests. The idea there is no evidence is not true, because the evidence is our constituents’ lives and what they are seeing every day. My constituents do not go to Holland, having crowdfunded all that money, to buy something that does not work. They are parents, and we must have faith in them—by the way, all the doctors put a lot of store in that—but nevertheless, the institutions whose guidance lays the foundations for medical decisions ultimately need clinical trial evidence for it to be sustainable, in addition to individual circumstances.

I welcome the Minister to her position, which she very much deserves. My appeal to her is that we put everything we possibly can into getting that empirical evidence and undertaking those trials so that we can say to our constituents that everything is being done to ensure that clinicians can make decisions with the greatest confidence and without the nervousness we have all encountered.

Finally, and this needs to be said, I was asked in my meeting, “You do realise we are being trolled?” We have had debates in this Chamber about the horrible abuse we receive—some of us, particularly female colleagues, have received obscene abuse—but members of the medical profession are now getting the same thing. I understand the frustration of a parent who has done everything they can to support their child and who feels that the system is not helping them. That is why we are having this debate, because we want them to be supported by the system, but there can be no justification for people in the medical profession being subjected to trolling and the sort of abuse I know they have received because they feel they have to make an objective decision. They have the best interests of the patient at heart, and I have faith in the medical profession. It is nervous because of the lack of evidence, so we need to move on with trials as quickly as possible. We need to be able to give our constituents confidence that the system is fair, transparent and consistent, and is not acting in an ad hoc fashion.

--- Later in debate ---
Seema Kennedy Portrait Seema Kennedy
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I apologise to the hon. Lady, because she did ask me that, and I am afraid I forgot to send a note to the Box. I am happy to write to her about whether that analysis has been done.

Many hon. Members, including my hon. Friend the Member for South Suffolk, talked about funding. Funding decisions are local decisions with clear local procedures. The process review is looking at this, and as I have said, it will report shortly. I call on the industry to invest in more trials, and to publish the results and the full underpinning data, because we all want to see licensed products that doctors can use with confidence.

Where there is supporting evidence, the Government and the NHS will work with companies to make the products available. Indeed, more than 110 patients are now being treated with a pure CBD extract product—Epidiolex, which numerous hon. Members have referred to—on an early access programme, ahead of a licensing decision by the European Medicines Agency. In developing a licensed product, the evidence has been generated on the safety profile and effectiveness of the product. It is this that provides clinicians with the confidence to prescribe and the system with the evidence it needs to make decisions on routine funding. The NHS does not routinely fund any new medicine until it has been through a process of evaluation to ensure that it is safe, effective and represents value for money.

On another point that the hon. Member for Gower brought up, about one of her constituents going on the Epidiolex trial, the specialist centres around the country are referring patients to GW Pharmaceuticals. There are certain criteria and a certain number of places, but if she wrote to me, I would be happy to meet her and we could discuss that further.

We need to develop further our knowledge base on these products. That is why good-quality clinical trials are imperative. We need to know more about the scale of the benefit of cannabis-based products across a wide range of indications. We also need to understand how this compares with existing treatments and, indeed, other promising new drugs that may be as effective.

James Cartlidge Portrait James Cartlidge
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The Minister is obviously aware that Epidiolex is a CBD-based medicine. Many parents believe, based on their anecdotal experience, that those compounds do not have as much impact on reducing seizures as THC, so can she assure me that the trials will also look at THC-based products?