Epilepsy: New Treatments

Baroness Hussein-Ece Excerpts

Monday 2nd February 2015 Lords Chamber

Asked by

[Baroness Hussein-Ece]

To ask Her Majesty’s Government what assessment they have made of the availability and accessibility of new epilepsy medications and treatments.

[Baroness Jolly (LD)]

My Lords, we want all patients with epilepsy to have access to high-quality, patient-centred services wherever they live. The National Institute for Health and Care Excellence has published clinical guidance and quality standards to drive improvements in the treatment of epilepsy both for children and adults. NICE will assess the safety and efficacy of any new treatments that could be beneficial to improving the quality of life for patients with epilepsy.

[Baroness Hussein-Ece (LD)]

I thank my noble friend for that response. However, is she aware that the report by the Neurological Alliance The Invisible Patients highlighted a lack of care, planning and commissioning for people with neurological conditions and that for those living with epilepsy in particular there seems to be a marginalisation and a heavy reliance on parents researching new treatments, care and diets? What do the Government plan to do to improve this state of affairs and will my noble friend perhaps say something about the very promising new trials and the cannabis-based treatments that are being rolled out across the country for people with intractable epilepsy?

[Baroness Jolly]

The noble Baroness asked quite a few questions. I think that parents will always want to look on the internet, now that that is a fairly safe area for advice. Clinical commissioning groups are responsible for planning the majority of epilepsy care, apart from the critical care, which is handled by NHS England. Two trials of cannabidiol are taking place in the UK and plenty in the States. I am sure that NICE will be keen to approve anything that is proved to be safe and effective as soon as possible.

--- Later in debate ---

[Baroness Jolly]

I am certainly not including cannabis in this but cannabidiol is being trialled in two places—Edinburgh and Great Ormond Street—with a view to moving it through to NICE as soon as the evidence is there and then on to treatment if that is deemed sensible.

[Baroness Hussein-Ece]

My Lords, when I asked my supplementary question, I mentioned that there was a heavy reliance on the parents of children with this condition researching new treatments. I meant to declare that a member of my family has this terrible condition—intractable epilepsy—and I have seen at first hand how parents try very hard to look for alternatives. One is the ketogenic diet, which was not offered or thought of until the parents pushed for it and then the child’s condition improved enormously. Some parents will not have that kind of access or know how to research it in the same way. Surely the onus is on the commissioning groups or the clinicians to suggest alternative treatments.

[Baroness Jolly]

Indeed. That particular diet has been approved by NICE and so there should be no problem. Neurologists should know that it is available and prescribe it.