Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether she is taking steps to improve the (a) diagnosis rate, (b) co-ordination of care and (c) access to specialist (i) care, (ii) treatment and (iii) support for hereditary spastic paraplegia.

In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases such as hereditary spastic paraplegia. The framework lists four priorities collaboratively developed with the rare disease community: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatments and drugs.

Each year since 2021 we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan, which is working to address these priorities across all rare diseases. Increasing awareness among healthcare professionals contributes to improved care, treatment and support for those living with rare conditions. NHS England has developed a digital resource “GeNotes” to support healthcare professionals, which includes information on hereditary spastic paraplegia.