PARLIAMENTARY WRITTEN QUESTION
(13 July 2026)

The Government is committed to improving the lives of those living with rare diseases, including stiff person syndrome, under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework.

NHS England has revised the national service specification for specialised neurology following extensive consultation. The service specification was published on 13 August 2025 and includes guidance on both specialised and core neurology services.

The published service specification for specialised neurology includes the provision of care and support, including diagnosis and management of rare movement disorders, which would include stiff person syndrome.