Jerome Mayhew

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.