Medicinal Cannabis

Jerome Mayhew Excerpts

Thursday 30th January 2025 Westminster Hall

[Jerome Mayhew (Broadland and Fakenham) (Con)]

It is a pleasure to see you in the Chair, Ms McVey. Do not worry, I have not defected. I just sat here, rather than where Conservatives would normally sit, because I did not want to interrupt the flow of the hon. Member for Strangford (Jim Shannon) while he was making his speech. I am grateful to him for securing this debate.

I am here because of one of my constituents, Matt Hughes, and particularly on behalf of his son, Charlie, who has severe treatment-resistant epilepsy. Mr Hughes has been to see me on a number of occasions. I am in the thick of a correspondence battle with the Department —the latest was in December last year—trying to deal with some of the problems that have arisen out of the 2018 NICE guideline change, which was brought in by Sajid Javid.

Somebody looking at the NICE guidelines would think, “Problem solved—wonderful! We can get access to these very important treatments for severely epileptic children.” But we are here today because that access is simply not available in practice. It is no good for us, as policymakers, to think that we have done the job because the policy has changed: if it is not working in practice, there was no point in changing the guidance.

There are a huge number of problems. There are licensing issues, to which I will return in more detail. There was the very unhelpful advice given by the British Paediatric Neurology Association in 2021, which seems to directly contravene the advice of NICE from 2018. There are many examples in which general practitioners have thought, after clinical assessment, that this kind of treatment, particularly second-generation drugs, should be supplied and yet local hospital advice was against it. Finally, there is the failure of the funding pathway. We have already heard about individual funding requests, but one problem is that the general application for many children to benefit from this kind of drug means that it fails the exceptionality test, so requests for individual funding are being refused on the grounds that the impact of the drug on the particular patient is insufficiently exceptional.

[Jim Shannon]

I thank the hon. Gentleman for coming along. I mentioned Joanne’s son Ben, who has failed 14 medications—the NHS says seven, so it is clear that there are failures in the system. We would think that the NHS should automatically respond, but it has not. That underlines the issue that the hon. Gentleman is raising.

[Jerome Mayhew]

That is the purpose of this debate: to encourage the Minister to get the NHS to change practice in this area. She could usefully start with the difficulty in licensing because second-generation medication is personalised. It does not have one or two active ingredients, but up to 20—that is probably not the right terminology but I hope we all understand—and the amounts of each of those active ingredients are personalised, in a patient-centric way. Yet we persist in applying a randomised controlled trial approach simply not appropriate for personalised medication. As a result, there is a failure to adopt licensing for medication that, anecdotally, is hugely effective, and has been hugely effective in supporting my constituent Charlie.

It is not beyond the wit of man to design an appropriate licensing system for this kind of medication because it has been done effectively elsewhere. We could look at the examples of Australia, Canada, the Netherlands, Spain, Portugal, Italy and even some states in the United States of America. If they can do it, why can’t we? I would be grateful if the Minister addressed that question specifically. Why do we persist with randomised control trials when we know that that acts against the adoption of this kind of modern medicine? Why does the Minister think that the licensing approach in all those first-world countries is in some way dangerous or inadequate?

Rather than repeating current policy, what change are the Government proposing to make to provide access through licensing for multiple active ingredient patient-centric dosing? What change are they proposing in relation to individual funding requests? Are they prepared to fix the problem of exceptionality, given that these drugs are routinely refused because they help too many children?

This is a huge issue. An estimated 35,000 children are affected. I hope the Minister will not dole out sympathy alone in her response, but set out the active change that the Government intend to make.