Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what plans he has to make enzyme replacement therapy accessible outside of London for patients suffering from Batten Disease.

Enzyme replacement therapy for CLN2 (Batten disease) is available through a managed access agreement. In Batten disease, the enzyme replacement therapy is administered into the cerebrospinal fluid by infusion via a surgically implanted intracerebroventricular access device. It can only be given in a healthcare setting by a trained healthcare professional knowledgeable in this specific administration. Given the complexity of the procedure, the training, equipment and governance required and the small numbers of patients with the disease, this is currently provided by one expert centre. NHS England is evaluating whether other centres have the expertise and infrastructure to provide the drug.