Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of ensuring people with (a) Huntington's disease and (b) other long-term neurological conditions have a single point of contact to coordinate their care.

More needs to be done to meet need on coordination of care for people with rare diseases, including Huntingdon’s disease, and work is underway to improve this.

The revised NHS England Specialised Neurology Services (adults) specification 2025 outlines a comprehensive model of care for specialised neurology services, including for patients with Huntington’s disease. This 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.

Steps are being taken to improve coordination of care for all rare diseases as a priority under the UK Rare Diseases Framework. This includes research funded by the National Institute of Health and Care Research to understand how to most cost-effectively improve care co-ordination to align to the needs of patients, which will report in 2026.