7. What support does the Welsh Government provide for children with epilepsy? OAQ52488

The neurological conditions delivery plan for Wales sets out our expectations for the future delivery of safe, sustainable and high-quality care for people who have neurological conditions. That includes, of course, supporting children and young people with neurological conditions such as epilepsy.

Last week, I hosted and chaired the Epilepsy Wales annual Epilepsy Aware event in the Assembly, and we heard that people with complex epilepsy were not able to access treatment, including the keto diet, although recommended as a first-line treatment by the National Institute for Health and Care Excellence. This included children with epilepsy after unsuccessfully trying two first-line drugs, which is also recommended by NICE—children who have a GLUT1 diagnosis. How do you therefore respond to their call for provision within Wales of the necessary treatments and levels of care as outlined in the NICE guidelines, a ketogenic team, and accepting the offer from the Daisy Garland foundation to fund a dietician in Wales for a year with immediate effect, alongside similar proposals in a list of ideas that would, finally, if delivered in Wales, meet the needs of these people and, as they say, impact positively on the finances of the NHS?

The Member is quite correct to say that, currently, services for patients in south Wales who require access to support for a ketogenic diet are provided in Bristol. That is correct. The service can be accessed through an individual patient funding request. I can say to the Member that officials do know of discussions between Cardiff and Vale university health board and the Welsh Health Specialised Services Committee about the possibility of those services now being provided more locally. So, those issues are ongoing as far as south Wales is concerned, and I look forward to a positive outcome of those discussions to see whether we can actually provide the service closer to south Wales at this moment in time than is presently the case.

First Minister, I appreciate the treatments that we have talked about, but one of the big problems is actually taking a child who has a severe seizure to the hospital in the first place. I've got constituents who have phoned for ambulances and, in fact, family who lived over half an hour away got there before the ambulance got there. A lone parent cannot take a child to the hospital with their child having a seizure in the back of the car; it's dangerous. They need the response from the ambulance quickly because the child sometimes stops breathing as a consequence of this. Will you ask your health Secretary to look at the discussions with the ambulance service to ensure that, for these children, they can get responses quickly so a parent doesn't have to see a child suffer whilst they're waiting for an ambulance?

The Member will be aware, of course, of the assessment system to determine the clinical priority of a patient. The type of response sent to a child who has experienced a seizure will depend on the information provided by the person who's dialled 999, but I can say in response to his particular concern that the chief ambulance services commissioner is currently overseeing a review of the amber category, which will make recommendations for improvement in the autumn, and it'll be important that this issue that he has raised is part of the examination that's taking place at the moment.

First Minister, whilst Mark Isherwood and I might not see eye to eye on many political issues, we have worked closely together on the question of medicinal cannabis with the MS Society. So, I wonder whether I can ask whether an assessment has been undertaken of how many children in Wales have severe epilepsy but could also benefit from the availability of cannabis oil like Billy Caldwell. And will you also see that preparations are made to ensure that the NHS in Wales is prepared to meet the demand for medicinal cannabis and prepared to prescribe it to patients if and when restrictions are relaxed by the UK Government?

It's difficult to provide a figure because it depends on the individual, of course, but she does ask an important question. This is tied up, as she will know, in the Misuse of Drugs Act 1971, which is not devolved, either in Wales or in Scotland. So, there are issues there that surround the ability of practitioners to prescribe drugs that are caught up in that Act. We know that cannabis derivatives can play a role in treating some medical conditions. That's why Sativex, of course, is available in Wales. I can say that, on 18 June, the Home Office Minister Nick Hurd, assuming he is still the Home Office Minister, announced plans to establish an expert clinicians panel, led by the UK chief medical officer, to advise Ministers on any applications to prescribe cannabis-based medicines. That panel will consider the merits of each individual case and make a clinical assessment of an exceptional and unmet clinical need. Now, what is not clear to us at the moment is how that will affect us in terms of prescribing. However, the chief pharmaceutical officer, Andrew Evans, is a non-voting member of the panel. So, even though we're talking about a devolved area, because the misuse of drugs isn't a devolved area, we need to make sure that restrictions are removed from London in order for us to be able to prescribe here in Wales. But I do hope that there is a proper examination of the possibilities of cannabis oil and what it might deliver for the welfare of some patients.