Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve accessibility to (a) education and (b) healthcare for people with progressive neurological conditions such as Friedreich’s Ataxia.

The Government is committed to improving the lives of those living with rare diseases, such as Friedreich’s ataxia. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, and these include: getting a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs. In February we published the fourth England action plan reporting on progress.

NHS England has revised the national service specification for specialised neurology, which now includes an annex providing greater clarity for neurology sub-specialties. This includes the categories of both movement disorders and neurogenetics, into which Friedreich’s ataxia falls. Every specialised National Health Service neurology centre could and should see patients with Friedreich’s ataxia.

The NHS England Genomics Education Programme has also developed a range of educational resources for healthcare professionals. This includes a Knowledge Hub page on Friedreich ataxia, including information on presentation, diagnosis, management, and links for clinicians to further resources, which is available at the following link:

https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/friedreich-ataxia/