Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve outcomes for children with neurodegenerative brain conditions.

The Government is committed to improving outcomes for children with neurodegenerative conditions through a combination of earlier diagnosis, better coordinated care, and support for innovation in treatment.

Services for children with rare and complex neurodegenerative conditions are commissioned through a mixed model, with NHS England responsible for highly specialised services and integrated care boards commissioning local, community, and ongoing care. This supports access to multidisciplinary teams and specialist expertise where needed, alongside community‑based care closer to home.

We are taking steps to support earlier diagnosis, including through advances in genomics. The Newborn Genomic Testing Programme will enable earlier identification of genetic causes, allowing timely intervention, access to appropriate treatments, and better-informed care and support for families. Additionally, ongoing work to improve awareness among healthcare professionals, through integrated genomics education, standardised clinical toolkits, and targeted diagnostic surveillance partnerships, is helping to ensure children are identified and referred at the earliest possible stage.

The Government is also supporting improvements in consistency and quality of care through national initiatives such as Getting It Right First Time and the development of service specifications, which help ensure that patients throughout England can access evidence‑based, high‑quality services.

In addition, we continue to invest in research through the National Institute for Health and Care Research, supporting studies into rare and neurodegenerative diseases, including the development of new treatments and a better understanding of disease progression. The development of disease‑modifying therapies such as gene therapies and targeted medicines, such as those for spinal muscular atrophy, can slow or alter disease progression, especially when started early. While many neurodegenerative conditions still do not have curative treatments, ongoing research and clinical trials continue to expand the range of therapeutic options available.

This is complemented by the UK Rare Diseases Framework and England Action Plans, which prioritise faster diagnosis, improved coordination of care, and increased awareness of rare conditions.