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 early and equitable access to diagnosis and treatment for people living with ataxia.

The Government is committed to improving the lives of those living with rare diseases, including rare ataxias, 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, including getting a diagnosis faster and improving access to specialist care, treatments, and drugs.

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 specification includes an Annex which provides greater clarity for neurology sub-specialties, including the categories of both movement disorders and neurogenetics, into which ataxias fall.

Additionally, the national specialised commissioning neurology transformation programme has developed guidance as part of an integrated care system toolkit, specifically to support the implementation of the service specification. Every specialised neurology centre could and should see patients with ataxias.

NHS England commissions two highly specialised services for patients with Ataxia telangiectasia: an adult service provided by Royal Papworth Hospital NHS Foundation Trust; and a paediatric service provided by Nottingham University Hospitals NHS Trust. NHS England also commissions the Ataxia Telangiectasia Society to support patient access to these services.

NHS England also supports patients through a range of Rare Disease Collaborative Networks (RDCNs), which seek to improve care, expertise, and patient outcomes for people living with rare diseases. The Rare Ataxia RDCN was established in 2025 and is working to increase professional and public awareness of ataxia, improve geographical equity of referrals, and strengthen collaboration with patient organisations, including Ataxia UK.