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PARLIAMENTARY WRITTEN QUESTION
(10 October 2025)

Question Asked

To ask the Secretary of State for Health and Social Care, what action he is taking to ensure people with Huntington's disease have a single point of contact to coordinate their care.

Asked by:
Dr Caroline Johnson (Conservative)

Answer

The revised NHS England Specialised Neurology Services (adults) Specification 2025 outlines a comprehensive model of care, detailing the requirements for specialised neurology services but also outlining the expectations of a system wide approach. It articulates how patients should move into and out of specialised neurology services, including patients with Huntington’s disease, incorporating end to end pathways within an Integrated Neurology System.

The NHSE Specialised Commissioning Neurology Transformation Team (NTP) have also produced a number of guidance documents to support the implementation of the revised service specification. This includes developing a neurology transformation toolkit, which outlines the impact of care coordination and case management functions in supporting more equitable and efficient care for people with long-term neurological diseases, including Huntington’s disease.


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