Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps is his department taking to ensure that people with Huntington’s disease in a) Newcastle-under-Lyme and b) Staffordshire have a named healthcare professional who coordinates their care.

The Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease, including in Newcastle-under-Lyme and Staffordshire. Better coordination of care is a priority under the UK Rare Diseases Framework.

On 26 February, the National Institute for Health and Care Excellence published an evidence-based new quality standard for rare diseases, which includes a named healthcare professional to coordinate care. It sets out priority areas for quality improvement and NHS England and my Rt Hon. Friend, the Secretary of State for Health and Social Care, are required to have regard to quality standards as they discharge their quality improvement duties. Local National Health Service commissioners are expected to take them fully into account in the design of services that meet the needs of their local populations.

The revised NHS England Specialised Neurology Services (adults) specification 2025 also outlines expectations of a system-wide approach, incorporating end-to-end pathways within an integrated neurology system, supporting more equitable and efficient care for people with long-term neurological diseases, including Huntington’s disease.

Dedicated care co-ordinators for Huntington’s disease are not centrally commissioned. Integrated care boards are responsible for working with their local communities to understand the needs of the local populations and to make decisions about how best to commission services, including for those with Huntington’s disease.