Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what support exists for those with (a) Huntington’s disease and (b) other complex neurological conditions.

Integrated care boards (ICBs) are responsible for commissioning most services for people with neurological conditions, including those with Huntington’s disease. At a national level, NHS England commissions the specialised elements of neurological care that patients may receive from 27 specialised neurological treatment centres across England. NHS England’s RightCare toolkit and Getting It Right First Time programme aim to improve care for people with neurological conditions, by reducing variation and delivering care more equitably across England.

New optimal clinical pathways for a range of neurological conditions were developed by the National Neurosciences Advisory Group, which ceased operation in 2022. These pathways set out what good treatment, care, and support should look like across a range of neurological conditions. They also help to guide and facilitate the commissioning of high-quality, effective neurology services by ICBs. The optimal clinical pathway for movement disorders outlines the care pathway that patients with Huntington’s disease should receive. Further information on the optimal clinical pathways are available at the following link:

https://www.nnag.org.uk/optimum-clinical-pathways

The Department funds research on neurological conditions through the National Institute for Health and Care Research (NIHR), and between 2018/19 and 2022/23, the Department spent £272.1 million on research into neurological conditions. This covers research into conditions such as Huntington’s disease, Parkinson’s disease, epilepsy, and multiple sclerosis. In 2022/23, the most recent year for which we have data, the Department, via the NIHR, spent £65.3 million on research into neurological conditions.