Question to the Department of Health and Social Care:

To ask Her Majesty’s Government what steps they are taking to ensure that people suffering from Lysosomal Acid Lipase Deficiency and other causes of cirrhosis in children are diagnosed as soon as possible and have a suitable route to commissioning that is as streamlined and effective as possible.

The UK Strategy for Rare Diseases commits all four countries of the United Kingdom to work to achieve reduced times for diagnosis of rare diseases and to work with the National Health Service and clinicians to establish appropriate diagnostic pathways which are accessible to, and understood by, professionals and patients.

NHS England commissions a highly specialised service for liver disease in children, including cirrhosis resulting from lysosomal acid lipase, from three expert centres in London, Birmingham and Leeds. These long established centres provide a clear referral pathway for expert diagnosis and management.